The Pathway of Patient Engagement in Rheumatology Research

The purpose of the initial  Pathway is to trace the evolution of patient engagement in rheumatology research, including identifying historical milestones, novel “firsts”, and tools. Then, as patient involvement continues to popularize and branch off into different directions, we can build on past successes and stay abreast of what is happening in the current landscape.

Go Directly to the Pathway

This tool will help stakeholders designing rheumatology research projects:

  • Quickly identifying existing projects, tools, and guidance to build upon – or evolve to new strategies;
  • Identifying initiatives and concepts of engagements already in practice to avoid duplication of efforts and to strengthen value measurements;
  • Learning more about those leading these efforts and identify potential collaboration opportunities.

Living Resource. This Pathway is the first step in tracing the history of patient engagement in the rheumatology community, so we can pinpoint the pivotal moments in its’ evolution and track its’ progression as it continues to develop.  Initial Pathway entries are limited to submissions provided prior to December 2020 by ACTion Council members (who currently only represent the United States, Canada, and Europe).  New entries will be collected and added in the second half of 2021. If you have knowledge of an initiative, Concept of Patient Involvement (CoPI), or historical milestone that you feel should be included on this Pathway, you may submit your initiative HERE

 All suggestions will be reviewed by ACTion Council members. The Pathway will be updated bi-annually.


Directions for Navigating the Pathway

Video: How to Navigate & Search the Pathway


Pathway Organization


Stopping Points on the Pathway

Resources to Improve Patient Involvement in Research

Resources to help stakeholders maximize patient involvement in research. These include Recommendations, Best Practices, Evaluations, Instruments, Frameworks, and Measurements. Some resources are included in Hover Boxes, most can be downloaded.

Novel 'Firsts' of Engagement

These entries highlight initiatives that were 'firsts' in patient engagement in rheumatology research. They may include new Concepts of Patient Involvement (CoPIs), novel project ideas, or processes those designing patient engagement in rheumatology research can cite, learn from, or build upon.

Historic Milestones

These pivotal activities did not qualify as novel 'firsts', nor did they produce specific tools to download. Also, they may or may not be specific to rheumatology, but they are significant milestones that can help map where we started and track our growth.

The stopping points in the Pathway are organized according to history and evolution, novel “firsts” in patient engagement, and resources developed for guidance.  

  • It should be viewed as a reference to track key initiatives that have shaped patient-research collaboration in our community. Information from these initiatives will expand as examples from these efforts evolve and are reported.
  • While there are dates used as markers, this is not intended to be a historic recording of events.
  • These entries may or may not be rheumatology specific, but they are significant because patient inclusion in rheumatology research evolved from these efforts. 

Search the Pathway

1. Create Your Own Search Box

The search box located at the top of the website is not specific to the Pathway, which is a widget inside this website.

To create your own search box just for the Pathway: 

  • PC users: While on this page press and hold down the Ctrl and F keys.
  • Mac users: While on this page press and Command and F keys.

Then in the search box type in a phrase (for example “regulatory” or “trials”). The number of times it appears in the Pathway will show next to the search box. Choose the up and down arrows to explore entries. 

2. Break Out Pathways

There are also smaller Break Out Pathways that are specific to:

  1. Tools for Patient Involvement
  2. Novel “Firsts”
  3. Location
  4. Stakeholder Group
 

View breakout Pathways located at the bottom of this page.

3. Use the Glossaries

View each Glossary (Concepts of Patient Involvement (CoPI), Tools for Patient Involvement, Research Contexts, and Organizations/Groups) to find where each entry is located by category.

Categories with Glossaries

Video: How to Use the Glossaries

These four categories are the key components associated with patient engagement in rheumatology research that the ACTion Council members felt were most important to track in the Pathway. Each category has a Glossary that is located on separate pages of this site. Glossaries can be used to quickly search by topic, tool, or group. 

Categories include: 

  • Tools to Improve Patient Involvement – Items such as Frameworks, Guidelines, Instruments, Recommendations, and Reports/Case Studies that have been adopted in rheumatology research or that were developed and implemented by those in the rheumatology space.  See Glossary.
  • Concepts of Patient Involvement (CoPI): Defines methods of engagement that involve patients in the research process. Some CoPIs have published guidance associated with them, which is recommended to follow by others planning to use similar terminology. Knowing which terms are used by which groups – especially if names are similar, but involvement practices differ – is important to track to improve patient engagement value measurements.  See Glossary. 
  • Research Contexts: Categories of research.  See Glossary.
  • Organization/Groups: Those mentioned in the Pathway. See Glossary.

At the bottom of each Pathway entry are tags that list any CoPI’s, Tools, or Contexts associated with the content. The tags also link back to the associated Glossary.



View the Pathway

1991

EULAR Congress Inclusion of Patients

EULAR Congress Inclusion of Patients
  • 1973: In 1973, “Social Leagues” – which were the patient organizations – officially joined the European Alliance of Associations for Rheumatology (EULAR)EULAR is the organization that represents people with arthritis/rheumatism, health professionals (HPR), and scientific societies of rheumatology of all the European nations. The aims of EULAR are to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention, and rehabilitation of musculoskeletal diseases. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with musculoskeletal diseases by the governing bodies in Europe. As such, they have always had their own educational program at the annual EULAR Congress meeting, but in the earlier years, the symposia they organized was mostly independent of the other congress sessions. eular.org which is now the European League Against Rheumatism.
  • 1991: The EULAR Congress in Budapest marks a change in the goal to implement more comprehensive programs organized by the Social Leagues, including more collaboration with health professionals.

It was not until 2008, after the EULAR Congress in Paris, where patient organizations merged into EULAR, becoming EULAR PARE (People with Arthritis/Rheumatism in Europe)EULAR PARE is the Committee within EULAR comprised of representatives and musculoskeletal user groups around Europe to work together towards improving the quality of life for people in Europe living with these conditions, with the vision to empower and help them lead full and independent lives.
www.eular.org/pare.cfm

For decades, EULAR PARE has featured patient posters dedicated to education and advocacy, and later an increasing number of abstracts and program sessions on collaborative research.

 

CoPI: Conference participant

Context: Poster presentation

1993

Patient Engagement – And We’re Off!

Patient Engagement – And We’re Off!

While patient engagement in other disease groups started a decade prior, patient involvement in rheumatology research started in the late 1990’s in Canada and around 2000 in Europe. Partly due to regulatory barriers between patients and pharmaceutical companies at that time, early patient involvement focused strongly on non-pharmacologic research (government, patient organizations, research institutes).

  • 1993: Cochrane Musculoskeletal (CM) CM is an international, non-profit organization that aims to help people make well-informed decisions about health care by preparing, maintaining, and promoting reviews on the effects of health care treatments. They produce reliable, up-to-date reviews of interventions for the prevention, treatment, or rehabilitation of musculoskeletal disorders in the form of systematic reviews. CM is also dedicated to making their systematic reviews available to those interested in treatments for musculoskeletal diseases musculoskeletal.cochrane.org formed a Consumer Group (CMSG), enlisting patient systematic reviewers to join health care professionals and researchers belonging to Cochrane. Canada
    • As of today, of all registered review groups that make up Cochrane, the CMSG is one of the largest with over 700 active health care professionals, researchers, and consumer representatives from 26 countries.

CoPI: Consumer reviewer

Context of Research: Systematic literature reviews, dissemination (knowledge translation)

1996

INVOLVE is established to support public involvement in research

INVOLVE is established to support public involvement in research
  • 1996: INVOLVEINVOLVE was established 1996 and is funded by the National Institute for Health Research (NIHR) to support active public involvement in National Health Services (NHS) public health and social care research. As a national advisory group the role of INVOLVE is to bring together expertise, insight, and experience in the field of public involvement in research (PIR), with the aim of advancing it as an essential part of the process by which research is identified, prioritized, designed, conducted and disseminated.
    www.invo.org.uk
    was established as part of the National Institute for Health Research (NIHR) NIHR was established in 2006 under the government’s health research strategy Best Research for Best Health to “create a health research system in which the NHS supports outstanding individuals, working in world-class facilities, conducting leading-edge research focused on the needs of patients and the public”. Since that time, we have transformed research in and for the NHS and helped to shape the health research landscape more broadly. Our mission is unchanged: to improve the health and wealth of the nation through research. We deliver against this mission through five core workstreams.
    www.nihr.ac.uk
    , to support active public involvement in National Health Services (NHS), public health, and social care research. As a national advisory group, the role of INVOLVE has been to bring together expertise, insight, and experience in the field of public involvement in research (PIR) Patient Involvement in Research is defined as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them, with the aim of advancing it as an essential part of the process by which research is identified, prioritized, designed, conducted, and disseminated. United Kingdom

NOTE: “PIR” is also referred to as Patient and Public Involvement (PPI) or Consumer Involvement.

INVOLVE later incorporated into the new NIHR Centre for Engagement and Dissemination, 2020.

 

CoPI: Public Involvement in Research (PIR)/Patient and Public Involvement (PPI), advisory panels

Context: Dissemination/knowledge translation

1998

Patient research collaboration in rheumatology begins in Canada

Patient research collaboration in rheumatology begins in Canada
  • 1998: First self-governed Consumer Advisory Council (CAC)The mission of the Consumer Advisory Council (CAC) is to advocate for consumers and provide for strong public and consumer input in healthcare reform policies in Connecticut. The purpose of the Consumer Advisory Council is to ensure significant consumer participation in the planning and implementation process. portal.ct.gov/OHS/Pages/Consumer-Advisory-Council was established as part of Canadian Arthritis Network/CAN The Canadian Arthritis Network (CAN) is a not-for-profit organization that supports integrated, trans-disciplinary research and development. can.arthritisalliance.ca, the first federally funded arthritis research institute in Canada.
  • 2000: CAN became Arthritis Research Canada (ARC) ARC was created in 2000 in recognition of the tremendous potential that research can bring to arthritis treatment in Canada, and indeed, the world. Arthritis Research Canada has earned international attention as a leading arthritis research environment. We have built a strong multi-disciplinary research team of outstanding medical doctors and research scientists, and we willingly collaborate with medical professionals around the world. www.arthritisresearch.ca and the CAC became the Arthritis Patient Advisory Board (APAB).The Arthritis Patient Advisory Board (APAB) is comprised of volunteer advocates with arthritis who bring personal experience and arthritis knowledge to research decision making at Arthritis Research Canada. Their goal is to ensure the patient perspective is represented on research matters related to prevention, treatment and self-management of arthritis. Individually and collectively, they communicate research information and findings to arthritis patients, professional organizations and the general public. www.arthritisresearch.ca  Additionally, Patient Organization, Arthritis Consumer Experts/JointHealthⓇArthritis Consumer Experts/JointHealthⓇ, a national organization that provides free, science-based information and education programs in both official languages to people with arthritis. https://jointhealth.org/ , was established.

CoPI: Advisory panels

Context: Research & Development

2000

Patients included in the regulatory process

Patients included in the regulatory process

While not specific to rheumatology, including patients in the regulatory process paves the way for advances in therapeutic outcomes.

  • 2000: The European Medicines Agency (EMA) EMA is a decentralized agency of the European Union (EU) responsible for the scientific evaluation, supervision, and safety monitoring of medicines in the EU www.ema.europa.eu invites patients as committee members and the Food and Drug Administration (FDA)Food and Drug Administration’s (FDA) evaluation of new medicines (United States). During clinical trials, researchers study whether new medicines are safe and effective for patients and whether the medicine’s benefits outweigh the risks.
    www.fda.gov
    expands the Patient Representative role to serve as consultants to scientific and regulatory reviewers.
  • 2003: EMA expands to patient inclusion in working groups.
  • 2005: EMA establishes their first collaboration framework for regulatory practices between EMA and patients and consumers and their organizations, which was revised in 2014
  • 2006: The EMA establishes the Patients’ and Consumers’ Working Party (PCWP) EMA is a decentralized agency of the European Union (EU) responsible for the scientific evaluation, supervision, and safety monitoring of medicines in the EU. The Patients’ and Consumers’ Working Party (PCWP) provides a platform for exchange of information and discussion of issues of common interest between EMA and patients and consumers. www.ema.europa.eu, which provides a platform for the exchange of information and discussion of issues of common interest between EMA and patients and consumers. The PCWP provides recommendations to EMA and its human scientific committees on all matters of interest in relation to medicines.

CoPI: Working groups, regulatory reviewers, consumer reviewers

Context: Regulatory process

2002

Patients are invited to join the rheumatology research team

Patients are invited to join the rheumatology research team
  • 2002: Outcome Measures in Rheumatology (OMERACT) OMERACT is a global community for the development of Core Outcome Sets in the field of rheumatology. Patients participate as research partners in all phases of the research and are equal members in any OMERACT working group.
    www.omeract.org
    invites patients to participate for the first time, alongside researchers and rheumatologists.

This led to the development of the CoPI Patient Research Partner (PRP) Patient Research Partner (PRP) is defined as a person with a relevant disease who participates or has participated as an active research team member on an equal basis with professional researchers, thus adding the value of experiential knowledge to a research project. established by the European League Against Rheumatism (EULAR)EULAR is the organization that represents people with arthritis/rheumatism, health professionals (HPR), and scientific societies of rheumatology of all the European nations. The aims of EULAR are to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention, and rehabilitation of musculoskeletal diseases. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with musculoskeletal diseases by the governing bodies in Europe. As such, they have always had their own educational program at the annual EULAR Congress meeting, but in the earlier years, the symposia they organized was mostly independent of the other congress sessions. eular.org in 2010. See Experience Working with Patients in Research Leads to Guidance for Best Practices, 2010Read more about the initial history of patient involvement at OMERACT (download pdf).

CoPI: Patient Research Partner (PRP), conference participant

Tools: Report – Patient Researcher Engagement

Context: Core Outcome Sets (COS)/Core Outcome Measures

Databanks and Registries

Databanks and Registries

Databanks and registries in the rheumatology community began actively collecting relevant data from patients that can be used in both non-pharmaceutical and drug development research efforts. However, most registries – while rheumatology in nature – typically only include patients as respondents.

However, groups such as FORWARD, The National Databank for Rheumatic DiseasesFORWARD, The National Databank for Rheumatic Diseases is the largest patient-reported research databank for rheumatic disorders in the United States. FORWARD is our organization’s core mission over the last 22 years—to advance research and discovery in Rheumatology and beyond through human connection and deep insight. As a nonprofit research group, the Forward Databank has over a thousand research publications, over 75 thousand patient participants, and over a 100 scientist collaborators. https://forwarddatabank.org/ , a patient-powered registry that collects life experiences from a wide variety of patients with RMDs, offers participants ways of advancing knowledge about the costs, outcomes, and causes of rheumatic diseases.
The patient perspective is enhanced, in part, due to FORWARD’s Co-Director, who was originally diagnosed with Juvenile Idiopathic Arthritis, and through their continued collaborations with patient organizations.

 

CoPI: Co-production of stakeholder groups

Context: Registries

Young people and families are included in research

Young people and families are included in research

 

  • 2002: The Childhood Arthritis and Rheumatology Research Alliance (CARRA) Founded by a small group of pediatric rheumatologists who aimed to create an investigator-led collaborative research network by establishing a registry. The information is provided by the medical team and by patients and their families. The registry was created to monitor the long-term safety of the medications used to treat pediatric rheumatic diseases. https://carragroup.org pediatric registry is established.  The founding members quickly realized that one of the best ways to achieve its primary focus was to begin a registry project. The CARRA Registry was later founded as a means to collect information about how childhood-onset rheumatic diseases are treated and how they affect patients by collecting information from the medical team, patients, and their families. United States
  • 2006: The National Institute for Health Research (NIHR) (NIHR) was established in 2006 under the government’s health research strategy Best Research for Best Health to “create a health research system in which the NHS supports outstanding individuals, working in world-class facilities, conducting leading-edge research focused on the needs of patients and the public”. Since that time, we have transformed research in and for the NHS and helped to shape the health research landscape more broadly. Our mission is unchanged: to improve the health and wealth of the nation through research. We deliver against this mission through five core workstreams. www.nihr.ac.uk establishes the ‘Patient Research Ambassadors’ network and supporting GenerationRGenerationR is a National Network (GenerationR Alliance) of Young People’s Advisory Group’s (YPAGs) based across the United Kingdom to support the design and delivery of paediatric research. GenerationR Alliance YPAGs are a resource available to any health researcher (both academic and life science industries) who seek the input of children, young people, and families in their research projects www.invo.org.uk , a series of young people’s advisory groups across the country enabling children and young people under 25 to be involved in research. United Kingdom

CoPI: Advisory panels

Context: Research & Development, dissemination (knowledge translation), children, registries, young adults

2005

Rheumatology guidance begins

Rheumatology guidance begins
  • 2005: Cochrane Musculoskeletal (CM)Cochrane Musculoskeletal (CM) is made up of health care professionals, researchers and consumer representatives that belong to Cochrane, an international, non-profit organization that aims to help people make well-informed decisions about health care by preparing, maintaining and promoting reviews on the effects of health care treatments. They produce reliable, up-to-date reviews of interventions for the prevention, treatment or rehabilitation of musculoskeletal disorders in the form of systematic reviews. CM is also dedicated to making our systematic reviews available to those interested in treatments for musculoskeletal diseases (dissemination). In 1993, they formed a Consumer Group (CMSG), enlisting patient systematic reviewers to join health care professionals and researchers belonging to Cochrane. Canada musculoskeletal.cochrane.org develops guidance for systemic review authors and for building partnerships in research.Consumer‐driven health care: Building partnerships in research, 2005. Shea B, Santesso N, Qualman A, Heiberg T, Leong A, Judd M, et al. Consumer-driven health care: building partnerships in research. Health Expectations 2005;8(4):352-9.
    musculoskeletal.cochrane.org
    Download PDF (download pdf)
  • 2006: Cochrane Musculoskeletal Consumer Group (CMSG)The CMSG formed in 1993, enlisting patient systematic reviewers to join health care professionals and researchers belonging to Cochrane. “The feedback provides a layperson’s perspective to complement the feedback provided by our clinical experts.”musculoskeletal.cochrane.org develops initial recommendations to aid knowledge translation and exchange between clinicians and consumersSantesso N, Maxwell L, Tugwell PS, Wells GA, O’connor AM, Judd M, Buchbinder R. Knowledge transfer to clinicians and consumers by the Cochrane Musculoskeletal Group. J Rheumatol. 2006 Nov;33(11):2312-8. PMID: 17086612.. These were updated in 2014.
  • 2008: Assessment of SpondyloArthritis International SocietyAssessment of SpondyloArthritis International Society is an international group of experts in the field of spondyloarthritis.
    asas-group.org
    /European Alliance of Associations for Rheumatology European League Against Rheumatism (EULAR) aims to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention, and rehabilitation of musculoskeletal diseases.
    eular.org
    (ASAS/EULAR) collaborated with patients to translate recommendations for the management of ankylosing spondylitis for the first time into a language easily understood by patients. (download pdf)

 

CoPI: Advisory panels, consumer reviewers

Tools: Guidance documents – patient-researcher engagement; Recommendations – dissemination

Context: Systemic literature reviews, lay summaries, guideline development, dissemination (knowledge translation)

2007

EULAR PARE Established

EULAR PARE Established
In 2007, the patient initiative of ‘PARE manifesto’ (which started in 1989) and the European League Against Rheumatism (EULAR)EULAR is the organization that represents people with arthritis/rheumatism, health professionals (HPR), and scientific societies of rheumatology of all the European nations. The aims of EULAR are to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention, and rehabilitation of musculoskeletal diseases. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with musculoskeletal diseases by the governing bodies in Europe. As such, they have always had their own educational program at the annual EULAR Congress meeting, but in the earlier years, the symposia they organized was mostly independent of the other congress sessions. eular.org Social Leagues officially merged, becoming the standing committee of EULAR PARE (People with Arthritis/Rheumatism in Europe)EULAR PARE is the Committee within EULAR comprised of representatives and musculoskeletal user groups around Europe to work together towards improving the quality of life for people in Europe living with these conditions, with the vision to empower and help them lead full and independent lives.
www.eular.org/pare.cfm
. In this year it was also decided that PARE members should be user-led organizations. This was put in writing through a the publication of PARE Value Principles. At this time, health professionals also became their own Standing Committee. This was the beginning of the three pillars of EULAR, which still exist today.

 

Since this time, EULAR PARE has featured patient posters dedicated to education and advocacy, and later an increasing number of abstracts and program sessions on collaborative research.

 

CoPI: Conference participant

Context: Poster presentation

 

2009

Pharmaceutical Companies attempt to engage with rheumatology patients

Pharmaceutical Companies attempt to engage with rheumatology patients

“Can I have a few moments of your time?”

Around 2009, pharmaceutical companies began realizing the benefits of patient involvement in research, but legal barriers minimized engagement. At this time, pharmaceutical companies did not have official patient-engagement branches, so outreach was often limited to patients they could access online (bloggers, social media influencers).

Since the immunology sectors of pharmaceutical companies had not yet formed patient engagement departments, conversations typically were not structured, casual phone conversations where patient advocates happily shared their opinions for no fee. By 2012, several companies began enlisting patient advocates to participate in advisory panels, in exchange for payment, but developed departments specializing in patient engagement in rheumatology did not become standard practice until a few years later.

CoPI: Advisory panels

Context: Research & Development

2010

Experience working with patients in research leads to guidance for best practices

Experience working with patients in research leads to guidance for best practices

As a few years have passed since patient engagement in rheumatology began, guidance and recommendations are developed based on lessons learned.

  • 2010: Patient Research Partner (PRP): As a result of patient-researcher collaboration with Outcome Measures in Rheumatology  (OMERACT) OMERACT is a global community for the development of Core Outcome Sets in the field of rheumatology. Patients participate as research partners in all phases of the research and are equal members in any OMERACT working group.
    omeract.org; omeractprpnetwork.org
    in 2002, Eueropean Alliance of Associations for Rheumatology European Alliance of Associations for Rheumatology (EULAR) European Alliance of Associations for Rheumatology (EULAR) is the organization which represents the people with arthritis/rheumatism, health professionals (HPR), and scientific societies of rheumatology of all the European nations. The aims of EULAR are to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention, and rehabilitation of musculoskeletal diseases. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with musculoskeletal diseases by the governing bodies in Europe.
    eular.org
    publishes recommendations for patient-researcher collaboration (download pdf) and defines the role of Patient Research Partner (PRP)Patient Research Partner (PRP) is defined as a person with a relevant disease who participates or has participated as an active research team member on an equal basis with professional researchers, thus adding the value of experiential knowledge to a research project.
    De Wit M, et al. European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Annals of the rheumatic diseases 2011;70(5):722-6.
    eular.org
    Europe
  • 2010: The University of the West of England (UWE)The University of the West of England (UWE) rheumatology group is involved in projects of regional, national, and global significance.www.uwe.ac.uk rheumatology group publishes a dedicated paper Patient collaboration in the design of Patient-Reported Outcome Measures: Capturing the Experience of Fatigue in Rheumatoid Arthritis
    Nicklin J, et al. Collaboration with patients in the design of patient-reported outcome measures: Capturing the experience of fatigue in rheumatoid arthritis. Arthritis Care & Research 2010;62(11):1552-8.
    on patient-researcher collaboration in the development of a new patient-reported outcome (PRO) for fatigue in rheumatoid arthritis (BRAF). United Kingdom. Measures were updated in 2017.Bristol rheumatoid arthritis fatigue scales (BRAFS) are free to use for clinical or academic reasons.
    www1.uwe.ac.uk/
  • 2011: European Alliance of Associations for Rheumatology (EULAR) EULAR is the organization that represents the people with arthritis/rheumatism, health professionals (HPR), and scientific societies of rheumatology of all the European nations. The aims of EULAR are to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention, and rehabilitation of musculoskeletal diseases. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with musculoskeletal diseases by the governing bodies in Europe.
    www.eular.org
    establishes the network of Patient Research Partners and develops patient engagement Reference Cards and Background document (download pdf). Europe
  • 2012: INVOLVEINVOLVE, Establishment 1996 and funded by the National Institute for Health Research (NIHR) to support active public involvement in National Health Services (NHS) public health and social care research. As a national advisory group, the role of INVOLVE is to bring together expertise, insight, and experience in the field of public involvement in research (PIR), with the aim of advancing it as an essential part of the process by which research is identified, prioritized, designed, conducted and disseminated.
    www.invo.org.uk
    publishes updated briefing notes for researchers (download pdf). INVOLVE notes some of the content is drawn from earlier editions is substantially different in its content, reflecting the changing environment since the original briefing notes were written in 2004. United Kingdom

CoPI: Patient Research Partners (PRPs), Public Involvement in Research (PIR)/Patient and Public Involvement in Research (PPI)

Tools: Recommendations – patient-researcher engagement; Reports – patient researcher engagement; Guidance documents – patient researcher engagement and briefing notes

Context: Guideline development, Patient-reported outcomes (PROs) 

Concepts of Patient Involvement (CoPI) change the paradigm for patient engagement in research

Concepts of Patient Involvement (CoPI) change the paradigm for patient engagement in research

 

  • 2011: Strategy for Patient Oriented Research (SPOR): Canadian Institutes of Health Research (CIHR) Canadian Institutes of Health Research played a prominent role in the launch, implementation, and oversight of SPOR, but represents only one in a multitude of partners.cihr-irsc.gc.ca.html establishes a Strategy for Patient-Oriented Research SPOR is a collaboration of researchers, patients, provinces and territories, health care professionals, and others – all working in partnership to integrate research into patient care, ultimately improving the health of Canadians. cihr-irsc.gc.ca (SPOR) to integrate evidence in all levels of the health care system.
  • 2012: Patient Research Partner (PRP): Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) GRAPPA is organized exclusively for non-profit, educational, and scientific purposes, specifically to facilitate the sharing of information related to psoriasis and psoriatic arthritis, networking among different medical disciplines that see psoriasis and psoriatic arthritis patients, and to enhance research, diagnosis, and treatment of psoriasis and psoriatic arthritis.
    grappanetwork.org
    invites Patient Research Partners for the first time. In 2015, a team of Patient Research Partners was permanently added to round out their perspective first report from Patient Research Partner perspective:
    De Wit M, Campbell W, FitzGerald O, Gladman DD, Helliwell PS, James J, et al. Patient Participation in Psoriasis and Psoriatic Arthritis Outcome Research: A Report from the GRAPPA 2013 Annual Meeting. The Journal of Rheumatology 2014;41(6):1206-11.
  • 2013: Core Outcome Measures in Effectiveness Trials (COMET)COMET brings together people interested in the development and application of agreed standardized sets of outcomes, known as ‘Core Outcome Sets’ (COS). These sets represent the minimum that should be measured and reported in all clinical trials of a specific condition, but COS are also suitable for use in routine care, clinical audit, and research other than randomized trials.
    comet-initiative.org
    & the International Dermatology Outcome Measures (IDEOM)(IDEOM) is a non-profit organization seeking to develop and validate measures throughout dermatology with an initial focus on psoriatic disease. They strive for the establishment of patient-centric outcomes to enhance the research and treatment of dermatological conditions. Launched in 2013, IDEOM seeks to bring together physicians, researchers, government agencies, pharmaceutical companies, payers, and patients from around the globe to develop and validate measures throughout the field of dermatology with an initial focus on psoriasis.
    dermoutcomes.org
    collaborate with Outcome Measures in Rheumatology OMERACTOMERACT is a global community for the development of Core Outcome Sets in the field of rheumatology. Patients participate as research partners in all phases of the research and are equal members in any OMERACT working group.
    omeract.org
    to adopt the patient-centered approach of developing core outcome sets with full involvement of patients.

 

CoPI: Patient Research Partner (PRP), Patient-Centered Outcomes Research (PCOR), Strategy for Patient-Oriented Research (SPOR), conference participant

Context: Clinical trials, assessing grant applications, Core Outcome Set (COS)

Opportunities for patient involvement in advisory panels expands

Opportunities for patient involvement in advisory panels expands
  • 2011: PCOR – Patient-Centered Research Outcomes (PCOR)Established by PCORI, this research approach is a new form of comparative effectiveness research (CER) that considers the needs and perspectives of patients and stakeholders by engaging them throughout the entire research process. www.pcori.org is established by the Patient-Centered Outcomes Research Institute (PCORI)The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit, nongovernmental organization and was authorized by Congress in 2010. PCORI is the largest funder of comparative effectiveness research (CER) in the United States with the mandate to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policymakers make better-informed health decisions.
    www.pcori.org
    and enlists patients to participate in clinical research grant evaluationsPCORI also engage the public through its own institutional activities, such as Merit Review, which includes patients and stakeholders as reviewers of research applications, ensuring dollars spent are aligned with research outcomes that are meaningful to the patient population. United States View other PCORI projects that included rheumatology patients in research. (download pdf)
  • 2012: National Institute for Arthritis and Musculoskeletal and Skin diseases (NIAMS)The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases.
    www.niams.nih.gov
    adds one patient to the grant application review team. 
  • 2012: The US Department of Defense (DoD) The Department of Defense is America’s largest government agency. With our military tracing its roots back to pre-Revolutionary times, the department has grown and evolved with our nation. Our mission is to provide the military forces needed to deter war and ensure our nation’s security. www.defense.gov created the Peer Reviewed Medical Research Program (PRMRP)PRMRP is one of 35 research programs managed by the Congressionally Directed Medical Research Programs (CDMRP). Patients/survivors/individuals living with the diseases and conditions with research programs managed by the CDMRP were incorporated into all aspects of the program cycle with equal voice to include research focus, investment strategy, and programmatic review in 1993, and into peer review in 1995.
    cdmrp.army.mil
    adds patients/individuals living with rheumatoid arthritis and osteoarthritis as peer reviewers starting in 2012 and lupus was added in 2015. In 2017, lupus became its own research program within the Congressionally Directed Medical Research Programs (CDMRP). The CDMRP is a Department of Defense (DOD) program. that receives congressional appropriations explicitly for. biomedical research in specific, congressionally identified. health matters. cdmrp.army.mil However, patients/individuals living with lupus originally participated in peer review starting in 2005 and continue doing so in the Lupus Research Program.
  • 2013: Establishment of Foundation for Research in Rheumatology (FOREUM)FOREUM Foundation for Research in Rheumatology is devoted to promote research in rheumatic and musculoskeletal diseases (RMDs) as an independent research funding body in rheumatology research. Basic and applied research of highest quality is supported to reduce the burden of disease for people with RMDs.
    www.foreum.org
    , supported by the European League Against Rheumatism (EULAR)EULAR is the organization that represents people with arthritis/rheumatism, health professionals (HPR), and scientific societies of rheumatology of all the European nations. The aims of EULAR are to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention, and rehabilitation of musculoskeletal diseases. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with musculoskeletal diseases by the governing bodies in Europe. As such, they have always had their own educational program at the annual EULAR Congress meeting, but in the earlier years, the symposia they organized was mostly independent of the other congress sessions. eular.org, involves patients in the government of the foundation as well as in the review of research grant applications.
  • 2013: The Patient-Centered Outcomes Research Institute (PCORI)The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit, nongovernmental organization and was authorized by Congress in 2010. PCORI is the largest funder of comparative effectiveness research (CER) in the United States with the mandate to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make better-informed health decisions.
    www.pcori.org
    established the Advisory Panel for Patient EngagementBy inviting the patient and caregiver community to help generate research questions, review research proposals, assist in the conduct of research, help disseminate information and evaluate impact, patient engagement ensures authentic patient-centeredness in the research process. www.pcori.org which is an advisory body that provides input and recommendations to PCORI Board of Governors, Methodology Committee, and staff to help plan, develop, implement, improve, and refine efforts toward meaningful patient-centered research. Panel members assure the highest patient engagement standards and a culture of patient-centeredness in all aspects of its work.
  • Most pharmaceutical companies realize the need for an internal patient engagement department. The use of Patient Advisors becomes common.

CoPI: Advisory panels , consumer reviewers, Patient-Centered Outcomes Research (PCOR)

Context: Assessing grant applications, Research & Development, Patient-Reported Outcomes (PROs)

As the value of patient engagement evolves, so does guidance and outcome focus

As the value of patient engagement evolves, so does guidance and outcome focus

As the decade progresses, international efforts to expand the patient voice in rheumatology research continues. As a result, more programs that focus on patient-reported needs, guidance for involving patients in research, and reports that assess patient involvement emerge.

  • 2013: Patient-Centered Outcomes Research Institute (PCORI)PCORI is an independent nonprofit, nongovernmental organization and was authorized by Congress in 2010. PCORI is the largest funder of comparative effectiveness research (CER) in the United States with the mandate to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policymakers make better-informed health decisions. In addition to requiring patient and stakeholder engagement in PCORI funded research, PCORI also engages the public through its own institutional activities, such as Merit Review, which includes patients and stakeholders as reviewers of research applications, ensuring dollars spent are aligned with research outcomes that are meaningful to the patient population. www.pcori.org began the novel funding opportunity, Eugene Washington Engagement Awards ProgramThe Eugene Washington PCORI Engagement Award program, named in honor of the first chair of PCORI’s Board of Governors, is intended to bring more patients, caregivers, clinicians, and other healthcare stakeholders into the research process. The goal is to support projects that will build a community better able to participate in patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) and serve as channels to disseminate study results. www.pcori.org/engagement , which supports projects that will build a community better able to participate in patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) and serve as channels to disseminate study results. Example of award: Matching Actions to Needs: What Matters Most to the Arthritis Community? (download pdf) – Arthritis Foundation, United States
  • 2014: Canada’s Strategy for Patient-Oriented Research (SPOR)Endorses the active partnership of patients, researchers, health professionals and decision-makers in research so as to build a sustainable and accessible health care system that optimizes the health of Canadian citizens. cihr-irsc.gc.ca publishes A Resource Guide for Research Teams and Networks (download pdf), a living guide to support researchers, decision-makers and other relevant stakeholders involved in a wide range of SPOR-related activitiesThis resource aims to:
    1) Clarify key concepts and terms relevant to involving patients in health research such as what we mean by patients, the public and stakeholders, and the different levels and types of involvement, and the rationales and perceived benefits of patient involvement
    2) Describe, at a very high level, the current state of the evidence about patient engagement with respect to the effectiveness of different methods in relation
    to process and outcome measures
    3) Assemble in one place, a selection of resource documents collected from leading patient engagement organizations around the world to provide basic guidance for researchers about principles and methods for involving patients
    in health research. 
  • 2014: Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA)Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) is organized exclusively for non-profit, educational, and scientific purposes, specifically to facilitate the sharing of information related to psoriasis and psoriatic arthritis, networking among different medical disciplines that see psoriasis and psoriatic arthritis patients, and to enhance research, diagnosis, and treatment of psoriasis and psoriatic arthritis.
    www.grappanetwork.org
    publishes Patient Participation in Psoriasis and Psoriatic Arthritis Outcome Research report (download pdf), co-authored by Patient Research Partners (PRPs)Patient Research Partner (PRP) is defined as a person with a relevant disease who participates or has participated as an active research team member on an equal basis with professional researchers, thus adding the value of experiential knowledge to a research project. After this publication, GRAPPA publishes annual patient reports through 2018.
  • 2014: Cochrane Musculoskeletal Consumer Group (CMSG)Formed in 1993, enlisting patient systematic reviewers to join health care professionals and researchers belonging to Cochrane. “The feedback provides a layperson’s perspective to complement the feedback provided by our clinical experts.” musculoskeletal.cochrane.org updates recommendations to aid knowledge translation and exchange between clinicians and consumers (download pdf).

 

CoPI: Patient Research Partners (PRPs), Patient-Oriented Research (POR), Patient-Centered Outcomes Research (PCOR)

Tools: Guidance – patient-researcher engagement;  Reports – patient researcher engagement, patient engagement, and dissemination; Instruments – patient engagement

Context: Patient-reported outcomes (PROs), Clinical Effectiveness Research (CER)/decision science, dissemination/knowledge translation

Formal training of patients to be more active in research begins with EUPATI

Formal training of patients to be more active in research begins with EUPATI

● 2012: The European Patients’ Academy (EUPATI)The European Patients’ Academy (EUPATI) was formed as a pan-European project implemented as a public-private partnership by a collaborative multi-stakeholder consortium from the pharmaceutical industry, academia, not-for-profit, and patient organizations. The Academy was started, developed, and implemented as a flagship project of the Innovative Medicines Initiative and continues to be led by the European Patients’ Forum (EPF)
www.eupati.eu
was established. They focus is on education and training to increase the capacity and capability of patients to understand and contribute to medical research and development and also improve the availability of objective, reliable, patient-friendly information for the public. Europe

● 2014: EUPATI Launches Patient Expert Training CoursesLearn more about the Patient Expert Training Courses at www.eupati.eu, as a result, as of 2019 has trained 96 patient experts on medicines development, clinical trials, medicines regulations, health technology assessment.

● Ongoing projects of EUPATI include rigorous content development for patient education, the furthering of advocacy skills of patient experts, and the strengthening of a European patient movement, and a continuously updated inventory of possibilities for patients to get involved in biomedical research and development.

 

CoPI: Patient Research Partner (PRP)

Tools: Instruments – patient engagement

Context: Clinical trials, regulatory process, health technology assessment, Research & Development

Focus on expanding PCOR leads to the established of collaborative communities – United States

Focus on expanding PCOR leads to the established of collaborative communities – United States
  • 2013: PCORnet PCORnet is a national resource that offers the kind of research ecosystem that has long been pursued: a fully integrated network where vast, highly representative health data, research expertise, and patient insights are built-in and accessible from the very start. The infrastructure of PCORnet is well established, meaning that the community knows how to maximize the value of these connections to deliver fast, trustworthy answers that advance public health. pcornet.org –  The era of big data, loosely defined as the development and analysis of large or complex data sets, the Patient-Centered Outcomes Research Institute (PCORI) The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit, nongovernmental organization and was authorized by Congress in 2010. PCORI is the largest funder of comparative effectiveness research (CER) in the United States with the mandate to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policymakers make better-informed health decisions.
    www.pcori.org
    establishes PCORnet, bringing new opportunities to empower patients and their families to generate, collect, and use their health information for both clinical and research purposes.
    Through PCORnet, a “network of networks” was established– Patient-Powered Research Networks (PPRNs), built and governed by stakeholder groups focused on specific conditions and community interests. Learn more about PPRN’s (download pdf).

Two rheumatology specific PPRN’s were developed, including:

  • 2015: ArthritisPowerVisit the ArthritisPower.org website for products and/or info about how to get involved. led by CreakyJointsCreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. CreakyJoints is a part of the non-profit Global Healthy Living Foundation, which receives funding from grants and sponsorships from pharmaceutical manufacturers, private foundations, and government-sponsored research grants. They frequently collaborate on research with major research institutions and universities.
    creakyjoints.org
    . ArthritisPower is a non-profit, patient-inspired, and patient-managed research initiative that helps patients make a difference in the fight against arthritis and related conditions. View ArthritisPower overview, includes links to publications (download pdf).
  • 2015: Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) PARTNERS is a PPRN linking patients, family members, caregivers, researchers, healthcare providers, and other people interested in pediatric rheumatic diseases. Through PARTNERS, patients, family members, and other caregivers are able to share research ideas, work on proposals, and join study teams. www.arthritis.org/science ) – led by healthcare providers, Childhood Arthritis and Rheumatology Research Alliance (CARRA)Childhood Arthritis and Rheumatology Research Alliance (CARRA) was founded by a small group of pediatric rheumatologists who aimed to create an investigator-led collaborative research network by establishing a registry. The information is provided by the medical team and by patients and their families. The registry was created to monitor the long-term safety of the medications used to treat pediatric rheumatic diseases.
    carragroup.org/
    , the US Arthritis FoundationThe Arthritis Foundation boldly pursues a cure for America’s #1 cause of disability while championing the fight against arthritis with life-changing resources, science, advocacy, and community connections. https://www.arthritis.org/, Friends of CARRA, the Lupus Foundation of AmericaLupus Foundation of America’s mission is to improve the quality of life for all people affected by lupus through programs of research, education, support, and advocacy.
    www.lupus.org/
    , and a quality-improvement learning network (Pediatric Rheumatology Care and Outcomes Improvement Network, or PR-COIN)Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) works to improve outcomes and provide safe, effective, efficient, timely, patient-centered, and equitable care for all children with rheumatic conditions. Our goals are to increase remission and clinically inactive disease rates among children with JIA, improve quality of life including optimal physical function and pain, and support families in managing their child’s condition.
    https://pr-coin.org/
    . View summary overview of PARTNERS (download pdf).
  • 2015 PCORnet Assessment:  Report evaluating the strengths and weaknesses of the initial phase dedicated to building its governance, technical, and research infrastructure. View report (download pdf).

CoPI: Patient-Centered Outcomes Research (PCOR), co-production of stakeholder groups, patient-powered networks

Tools: Reports – patient research engagement

Context: Registries, patient-powered registries, children

 

Young People Help Shape Rheumatology Research

Young People Help Shape Rheumatology Research

Young people need a voice too! The evolution of patient engagement in rheumatology research expands to ensure the voice of the younger patients is counted.

  • 2014: EULAR Young PAREYoung PARE aims to improve the quality of life of young people (18 to 35 years old) with rheumatic and musculoskeletal diseases (RMDs) by raising the profile of these conditions, and by creating a network of individuals who work in European countries on behalf of young people with RMDs.
    eular.org/pare_young_pare
    was established as the first youth committee (ages 18-35) established within an international umbrella organization, with a remit for embedding the youth perspective into EULAR’s activities, as well as in shaping clinical and research activities of relevance to young people. The founding of Young PARE was based on a collaborative and co-produced youth research project, funded by EULAR, in collaboration with young people, adult patients, health professionals and researchers in rheumatology across Europe.
  • 2016: Your RheumYour Rheum is a group of people in the UK aged 11-24 years who have a diagnosed rheumatic condition. Your Rheum provides an easy way for young people to understand and get involved in rheumatology research that is relevant to them.
    https://yourrheum.org/
    was established to provide young people aged 11 to 24 with the opportunity to shape pediatric and adolescent rheumatology research. United Kingdom

 

CoPI: Advisory panels, co-production of stakeholder groups

Context: Children, Research & Development, young adults

 

Establishment and Evolution of the Patient-Focused Drug Development Initiative

Establishment and Evolution of the Patient-Focused Drug Development Initiative

Patient-focused drug development (PFDD) is a systematic approach to help ensure that patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation. The primary goal of patient-focused drug development is to better incorporate the patient’s voice in drug development and evaluation

  • 2012: The Food and Drug Administration (FDA)Food and Drug Administration’s (FDA) evaluation of new medicines (United States). During clinical trials, researchers study whether new medicines are safe and effective for patients and whether the medicine’s benefits outweigh the risks.
    www.fda.gov/
    established the PFDD initiative under the Prescription Drug User Fee Act (PDUFA V)2012, the US President signed into law the Food and Drug Administration Safety and Innovation Act (FDASIA) to include the reauthorization of the Prescription Drug User Fee Act (PDUFA) that provides FDA with the necessary resources to maintain a predictable and efficient review process for human drug and biologic products.
    www.fda.gov
    .
  •  2016: The National Psoriasis FoundationNational Psoriasis Foundation (NPF) drives efforts to cure psoriatic disease and to improve the lives of those affected.
    www.psoriasis.org
    a public meeting to hear perspectives from psoriasis patients, caregivers, and other patient representatives on the most significant dermal or skin-related effects of the disease. Publishes Voice of the Patient report (download pdf). While attendees were not asked to focus on the arthritic component, a large percentage of comments and concerns included those with Psoriatic Arthritis.
  •  2017: The Arthritis Foundation
    The Arthritis Foundation boldly pursues a cure for America’s #1 cause of disability while championing the fight against arthritis with life-changing resources, science, advocacy, and community connections. www.arthritis.org
    hosts the first externally ledExternally-led means it was not commissioned by the FDA so nonprofit organization(s) raise funds to host a meeting offsite. Patient-Focused Drug Development (PFDD) meeting for Osteoarthritis and, as a result, publishes OA Voice of the Patient ReportVisit www.arthritis.org to view videos and more information about this PFDD. You can also download the Report HERE (download pdf).
  •  2017: Lupus and Allied Diseases AssociationThe Lupus and Allied Diseases Association, Inc., is an all-volunteer national non-profit dedicated to enhancing quality of life for those impacted by lupus and allied diseases and other conditions of unmet needs by fostering collaboration among stakeholders, promoting unity in the community, and participating in innovative advocacy, awareness and biomedical research initiatives www.ladainc.org , the Lupus Research AllianceThe Lupus Research Alliance is the largest nongovernmental, nonprofit funder of lupus research worldwide. The organization aims to transform treatment while advancing toward a cure by funding the most innovative lupus research; fostering diverse scientific talent; stimulating collaborations; and driving discovery toward better diagnostics, improved treatments and, ultimately, a cure for lupus. www.lupusresearch.org , and the Lupus Foundation of America unite to host an externally-led PFDD meeting for lupus. Publishes Lupus: Patient Voices reportVisit www.lupuspfdd.org to learn more about this PFDD. The full report can be downloaded HERE (download pdf).
  • 2018 – 2019: FDA develops PFDD guidance materialsInformation and documents related to FDA’s development of the methodological PFDD guidance, including public workshops, draft guidance, and hypothetical scenarios, which are all intended to serve as a basis for dialogue.
    View guidance materials at:
    www.fda.gov
    to improve efforts to gain patient input and assessing outcomes in regulatory engagement.
  • 2019: FasterCuresFasterCures, a center of the Milken Institute works to build a system that is effective, efficient, and driven by a clear vision: working with our partners to build a patient-centric system where science is accelerated, unnecessary barriers are overcome, and lifesaving and life-enhancing treatments get to those who need them as rapidly as possible.
    https://milkeninstitute.org
    publishes a guide for patient advocacy organizations (download pdf) interested in hosting, or are currently planning, an externally led PFDD meeting. The guide includes links to other tools for planning PFDD meetings, including the PFDD Meeting Tracker, the PFDD Readiness Assessment, and the PFDD Community Toolbox.

CoPI: Patient-Focused Drug Development (PFDD), regulatory reviewers

Tools: Guidance Documents – patient-focused drug development (PFDD); Reports – patient-focused drug development (PFDD)

Context: Regulatory process, clinical trials, Research & Development, guideline development

Patient engagement in research is here to stay – the growth of patient-centered research conferences

Patient engagement in research is here to stay – the growth of patient-centered research conferences

Blended Engagement Conferences

  • 2014: Since the launch and success of patient-engagement conferences in the United States and Europe in 2014, stakeholders in search of information to help improve collaboration efforts has surged. However, most include sessions that merge various disease groups, who utilize different Concepts of Patient Involvement (CoPI) Concepts of Patient Involvement (CoPI) define methods of engagement that involve patients in the research process. Some CoPIs have published guidance associated with them, which is recommended to follow by others planning to use the same term. and whose communities have disease-specific engagement barriers that are not considered. For those new to the patient engagement in the research space, this can cause confusion and the adaptation of terms and processes that were established in one community may not translate to the next. This can lead to issues with value measurements, particularly if the same term is used with different collaborative methods.
  •  This problem was demonstrated in 2014, during a US Patients as Partners meeting, when audience members requested clarification of the term Patient Research Partner (PRP)Patient Research Partner (PRP) is defined as a person with a relevant disease who participates or has participated as an active research team member on an equal basis with professional researchers, thus adding the value of experiential knowledge to a research project., which was used by several presenters but the method of engagement varied. This moment contributed to the realization that a rheumatology-specific Council may be necessary (See ACTion Council, 2018). 

“Patients Included” Events

  • 2015: PCORI’s first Annual Meeting in 2015 brought together more than 1,100 members of the Patient-Centered Outcomes Research Institute (PCORI)PCORI is an independent nonprofit, nongovernmental organization and was authorized by Congress in 2010. PCORI is the largest funder of comparative effectiveness research (CER) in the United States with the mandate to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policymakers make better-informed health decisions.
    www.pcori.org
    community, including patients, researchers, and other health care stakeholders. PCORI has had meetings every year since 2015 and all have been designated as a “Patients Included” event, meaning, patients and caregivers are involved as full participants in the event’s planning and delivery, and necessary accommodations are provided for patients and caregivers to facilitate their participation.

CoPI: Patient Research Partner (PRP), Patient-Centered Outcomes Research (PCOR), conference participant

2015

Patient Engagement in the Regulatory Process – Tools Emerge

Patient Engagement in the Regulatory Process – Tools Emerge

Patient testimony in the regulatory process expands in the second half of this decade and the Food and Drug Administration (FDA)Food and Drug Administration’s (FDA) evaluation of new medicines (United States). During clinical trials, researchers study whether new medicines are safe and effective for patients and whether the medicine’s benefits outweigh the risks.
www.fda.gov
and the European Medicines Agency (EMA) EMA is a decentralized agency of the European Union (EU) responsible for the scientific evaluation, supervision, and safety monitoring of medicines in the EU www.ema.europa.eu join forces!

In addition to the European Medicines Agency EMA recently revising their original framework for interaction between the agency and patients and consumers and their organizations (2014) (download pdf):

  • 2015: The FDA launches the Patient Engagement Advisory Committee (PEAC)Patient Engagement Advisory Committee (PEAC) – Food and Drug Administration (FDA) committee providing advice to the Commissioner or designee on complex issues relating to medical devices, the regulation of devices, and their use by patients.
    www.fda.gov/patients
    to provide advice relating to medical devices (download pdf). CoPI: Patient Preference Information (PPI)PPI: Qualitative or quantitative assessments of the relative desirability or acceptability to patients of specified alternatives or choices among outcomes or other attributes that differ among alternative health interventions. is established to describe this patient engagement. PPI framework and guidance released for the Center for Devices and Radiological Health (CDRH)(CDRH) recognizes that scientists, clinicians, device developers, and regulators play critical roles in evaluating and communicating the benefits and risks of medical devices. However, only patients live with their medical conditions and make daily choices regarding their health care. Their voice and perspective are critical to understanding the impact of medical devices.
    www.fda.gov/about-fda/fda-organization
    medical device decision-making.
  • 2016: FDA and the EMA create a new workgroup on patient engagement called the FDA/EMA Patient Engagement ClusterWork group that allows FDA and EMA to share best practices involving patients along drug and biologic regulatory lifecycles. Information that is discussed is covered by confidentiality agreements signed by the FDA and EMA.
    www.fda.gov/patients
    to share best practices involving patients along with drug and biologic regulatory lifecycles.
  • 2017: FDA launches Patient Engagement Collaborative The Patient Engagement Collaborative (PEC) is a group of patient organizations and individual representatives who discuss how to achieve more meaningful patient engagement in medical product development and other regulatory discussions at the FDA. The PEC was established by the FDA and the Clinical Trials Transformation Initiative (CTTI), a public-private partnership that brings together organizations and individuals representing academia, clinical investigators, government and regulatory agencies, industry, institutional review boards, patient advocacy groups and others to develop evidence-based solutions to clinical research challenges. www.fda.gov/patients with the Clinical Trials Transformation Initiative (CTTI)The FDA, together with the Clinical Trials Transformation Initiative, established a group of patient organization and individual representatives to discuss topics focusing on enhancing patient engagement in medical product development and regulatory discussions at FDA.
    www.ctti-clinicaltrials.org/
    to develop guidance materials (download pdf) for including patients in the R & D continuum. This collaborative was modeled after the European Medicines Agency (EMA)’s Patients’ and Consumers’ Working PartyEMA is a decentralized agency of the European Union (EU) responsible for the scientific evaluation, supervision, and safety monitoring of medicines in the EU. The Patients’ and Consumers’ Working Party (PCWP) provides a platform for exchange of information and discussion of issues of common interest between EMA and patients and consumers. www.ema.europa.eu/en/committees.
  • 2017: EMA involves young people in their activities and establishes the principles for the involvement of young patients, consumers, and their carers, in the Agency’s scientific committees and working parties in a consistent and efficient manner (download pdf).
  • 2017: EMA begins holding public hearings to give European citizens a voice in the evaluation of the safety of medicines and empower them to express their views on issues related to the safety of certain medicines and the management of risks.
  • 2017: EMA expands opportunities to acquire patients’ perspectives on benefit/risk considerations within the Committee for Medicinal Products for Human Use (CHMP)(CHMP) is the European Medicines Agency’s (EMA) committee responsible for human medicines. The CHMP replaced the former Committee for Proprietary Medicinal Products (CPMP) in May 2004.www.ema.europa.eu/en/committees meetings.

CoPI: Regulatory reviewers, working groups, advisory panels, Patient Preference Information (PPI)

Tools: Frameworks – regulatory; Guidance Documents – patient engagement

Context: Regulatory process, clinical trials, Research & Development, health technology assessment (HTA), decision aids, young adults

Pharmaceutical companies get more involved in patient research collaborations

Pharmaceutical companies get more involved in patient research collaborations

By 2015, most pharmaceutical companies had formed “patient engagement” departments and regularly enlisted the help of Patient Advocates to serve on Advisory Panels, summarizing the patient experience on behalf of the entire population. In addition to recognizing a need to include a more realistic patient sample, efforts to include patient collaboration in early drug development were also underway.

  • 2015: The International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis)AiArthritis helps others, like us, living with autoimmune or autoinflammatory diseases that include inflammatory arthritis as a major clinical component, have a voice – alongside other stakeholders as equals – so, together, we can solve problems that impact education, advocacy, and research. www.aiarthritis.org wins an Innovation Impact award winner for their A Community Team (ACT) project (download pdf).
    • Addressed regulatory barriers between patients and industry
    • Tested a new Concept of Patient Involvement (CoPI) where patients lead qualitative research with professionals as their advisors (Mentor Assisted ResearchMentor Assisted Research is a CoPI where patients lead various phases of research with professionals assisting as advisors.) FORWARD National Databank for Rheumatic Diseases served as a research consultant.
    • Improved sample accuracy by enabling all patients to be included, regardless of prior advocacy experience, geography, or disease limitations.
  • 2015: Pharmaceutical companies sit “at the table”, along with patient groups and other stakeholders, to help the Clinical Trials Transformative Initiative (CTTI)This group was organized to develop and drive adoption of practices that will increase the quality and efficiency of clinical trials.
    www.ctti-clinicaltrials.org
    develop recommendations (download pdf)regarding ways patients groups (i.e., patient and disease advocacy organizations, voluntary health organizations, nonprofit research foundations, public health organizations) could be engaged in the therapy development process, particularly around clinical trials. AiArthritis referenced these recommendations, and associated CTTI tool (download pdf), as a starting point to build on additional ways to increase engagement. 

Clinical Trials:  For the first time in the mid 2010’s, industry begins enlisting the help of patients, via Advisory Panels, to help develop new strategies for all phases of the Research & Development continuum, with a focus on clinical trials.

 

CoPI: Mentor Assisted Research (MAR), co-production of stakeholder groups, advisory panel

Tools: Reports – patient engagement

Context: Qualitative research, Research & Development, clinical trials

Rheumatology Scientific Meetings Continue to Unite Researchers, Rheumatologists, and Patients

Rheumatology Scientific Meetings Continue to Unite Researchers, Rheumatologists, and Patients

While the European League Against Rheumatism (EULAR)EULAR is the organization that represents people with arthritis/rheumatism, health professionals (HPR), and scientific societies of rheumatology of all the European nations. The aims of EULAR are to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention, and rehabilitation of musculoskeletal diseases. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with musculoskeletal diseases by the governing bodies in Europe. As such, they have always had their own educational program at the annual EULAR Congress meeting, but in the earlier years, the symposia they organized was mostly independent of the other congress sessions. eular.org has always involved patients at their annual Congress, the American College of Rheumatology (ACR)American College of Rheumatology (ACR) is a professional membership organization whose mission is to empower rheumatology professionals to excel in their specialty. They are committed to improving the care of patients with rheumatic disease and advancing the rheumatology subspecialty.
www.rheumatology.org
had a slower start.

  • 2016: 1st patient-centered research study group is held at the American College of Rheumatology (ACR) annual meeting.
  • 2017: EULAR Standing Committee of People with Arthritis/Rheumatism in Europe (PARE)(EULAR PARE) is the Committee within EULAR comprised of representatives and musculoskeletal user groups around Europe to work together towards improving the quality of life for people in Europe living with these conditions, with the vision to empower and help them lead full and independent lives.
    www.eular.org/pare
    initiate the EULAR study group for collaborative research. The EULAR study group meets annually during the EULAR congress and reports progress and activities through an electronic poster. The study group for collaborative research is meant to bring together physicians/researchers and PRPs. It provides a great opportunity to exchange new experiences and developments and discuss trendy topics. View meeting overview (download pdf).
  • 2017: The ACR invites patients, for the first time, to present research posters.

CoPI: Patient-Centered Outcomes Research (PCOR), Patient Research Partners (PRP), conference participant

Tools: Report – patient engagement

Context: Poster presentations, study groups

the ACTion Council is established

the ACTion Council is established

Led by patients who have helped shaped patient engagement in this space, the ACTion CouncilLearn more about the ACTion Council at www.rheumactioncouncil.org unites a global representation of key stakeholders in the rheumatology research community to record the history of patient engagement and track its continued expansion so efforts are not duplicated, value measurements can be improved, and new initiatives can evolve from existing successes.

CoPI: Co-production of Stakeholder Groups

Additional frameworks and recommendations for including patients in research

Additional frameworks and recommendations for including patients in research
  • 2018: INVOLVEINVOLVE was established in 1996 and funded by the National Institute for Health Research (NIHR) to support active public involvement in National Health Services (NHS) public health and social care research.As a national advisory group, the role of INVOLVE is to bring together expertise, insight, and experience in the field of public involvement in research (PIR), with the aim of advancing it as an essential part of the process by which research is identified, prioritized, designed, conducted and disseminated.www.invo.org.uk
    produces a set of six draft Standards for Patient Engagement (download pdf) that are currently piloted and evaluated in different areas of health research. United Kingdom
  • 2018: Canadian Institute of Health Research (CIHR)The Canadian Institutes of Health Research (CIHR) is Canada’s federal funding agency for health research. Composed of 13 Institutes. It collaborates with partners and researchers to support the discoveries and innovations that improve our health and strengthen our health care system.https://cihr-irsc.gc.ca publishes draft Ethics Guidance for Developing Research Partnerships with PatientsThe proposed ethics guidance builds on the SPOR Patient Engagement Framework and, once finalized, could be adapted in various formats by SPOR leads and other initiatives, organizations, and institutions to serve as an educational resource for all those involved in research partnerships with patients.
    http://www.cihr-irsc.gc.ca
    , in support of Canada’s Strategy for Patient-Oriented Research (SPOR)Endorses the active partnership of patients, researchers, health professionals and decision-makers in research so as to build a sustainable and accessible health care system that optimizes the health of Canadian citizens.https:cihr-irsc.gc.ca. The project is a response to ethical issues that were initially identified by the SPOR SUPPORT Unit Patient Engagement Working GroupPatient engagement means fostering a climate in which researchers, health care providers, decision-makers and policy-makers understand the value of patient involvement and patients see the value of these interactions.Engaging patients is an integral component in the development and implementation of all elements of SPOR https://cihr-irsc.gc.ca and reiterated at various conferences and workshops.
  • 2019: ESCEO (European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases)ESCEO is a not-for-profit organization, dedicated to a close interaction between clinical scientists dealing with bone, joint, and muscle disorder, pharmaceutical industry developing new compounds in this field, regulators responsible for the registration of such drugs and health policymakers, to integrate the management of Osteoporosis and Osteoarthritis within the comprehensive perspective of health resources utilization.
    The objective of ESCEO is to provide practitioners with the latest clinical and economic information, allowing them to organize their daily practice, in an evidence-based medicine perspective, with a cost-conscious perception.
    www.esceo.org
    & World Health Organisation (WHO) publish (download pdf)Best practice principles for engaging patients in health research, treatment guidelines, and regulatory processesM. de Wit e.a., Principles for engaging with patients in health research, treatment guidelines and regulatory processes: Results of an expert group meeting organized by the World Health Organization (WHO)WHO is the United Nations agency that connects nations, partners and people to promote health, keep the world safe and serve the vulnerable – so everyone, everywhere can attain the highest level of health.www.who.int and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis, and Musculoskeletal Diseases (ESCEO), Lancet, April 2019”.

CoPI: Strategy for Patient-Oriented Research (SPOR), Patient Involvement in Research (PIR)/Patient and Public Involvement (PPI), working groups

Tools:  Guidance documents – ethics

Context: Ethical review, regulatory process, clinical research, guideline development

Precision Medicine in Rheumatology is on the Horizon

Precision Medicine in Rheumatology is on the Horizon
  • 2017: While Precision Medicine (PM) Precision Medicine is a medical approach that proposes to prevent and treat disease based upon a person’s unique genetic makeup and their lifestyle habits. Precision medicine, the ability to accurately measure specific predictors of patient outcomes is implemented in personalized clinical care. research has progressed in oncology for years, only recently has there been a focus in the rheumatology spaces. As treat-to-target (T2T)T2T is a medical strategy that sets remission – defined as the absence of signs and symptoms of significant inflammatory disease activity – or low disease activity as a goal. Specific disease management targets are set. Then disease activity may be measured as frequently as monthly through lab tests and clinical examinations. If the targets are not reached, medications and/or doses are adjusted according to a predefined protocol. The process continues until the goal is achieved. www.aiarthritis.org/precisionmedicine treatment protocols prove successful, and the complexity of rheumatic diseases is realized, efforts to advance science towards precision treatments have continued to evolve.
  • 2019: Preparing Patients for Precision Medicine Project – (Underway) – Developing a patient-led shared decision-making tool to help patients talk to their doctors about participating in future precision medicine trials, which will include patients who will may differ from those currently enrolled (general patient population versus atypical presentation). Learn more.International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) AiArthritis helps others, like us, living with autoimmune or autoinflammatory diseases that include inflammatory arthritis as a major clinical component, have a voice – alongside other stakeholders as equals – so, together, we can solve problems that impact education, advocacy, and research.www.aiarthritis.org
    , professional advisor OMERACT.

CoPI: Research advocacy, Mentor Assisted Research (MAR)

Context: Precision medicine, clinical trials, decision aids

 

Establishing measurements of effective patient engagement

Establishing measurements of effective patient engagement

2018: Arthritis Research Canada (ARC)ARC was created in 2000 in recognition of the tremendous potential that research can bring to arthritis treatment in Canada, and indeed, the world. Arthritis Research Canada has earned international attention as a leading arthritis research environment. We have built a strong multi-disciplinary research team of outstanding medical doctors and research scientists, and we willingly collaborate with medical professionals around the world. www.arthritisresearch.ca introduces the Patient Engagement in Research Scale (PEIRS)Learn more about the PEIRS tool at:
www.arthritisresearch.ca/peirs/
, the first tool of its kind to evaluate the effectiveness of patient engagement in all areas of research. ARC scientists and Patient Research Partners (PRPs) worked together to create this tool.

The tool is designed to measure the degree of meaningful patient engagement in research projects from a patient perspective.

CoPI: Patient Research Partners (PRPs)

Tools: Instruments –patient engagement

Context: Measuring impact

Additional frameworks, recommendations, and reviews

Additional frameworks, recommendations, and reviews

 

  • 2015: Outcome Measures in Rheumatology (OMERACT)OMERACT is a global community for the development of Core Outcome Sets in the field of rheumatology. Patients participate as research partners in all phases of the research and are equal members in any OMERACT working group.https://omeract.org publishes recommendations for collaborative research Cheung PP, et al. Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP. The Journal of rheumatology 2016;43(1):187-932015
    https://omeractprpnetwork.org
    .
  • 2015: With funding from European League Against Rheumatism (EULAR)EULAR is the organization that represents people with arthritis/rheumatism, health professionals (HPR), and scientific societies of rheumatology of all the European nations. The aims of EULAR are to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention, and rehabilitation of musculoskeletal diseases. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with musculoskeletal diseases by the governing bodies in Europe. As such, they have always had their own educational program at the annual EULAR Congress meeting, but in the earlier years, the symposia they organized was mostly independent of the other congress sessions. eular.org, a mixed task force of researchers and patient research partners from over ten European countries develops a new patient derived Health Related Quality of Life instrumentde Wit MPT, Kvien TK, Gossec L. Patient participation as an integral part of patient-reported outcomes development ensures the representation of the patient voice: a case study from the field of rheumatology. RMD Open 2015;1:e000129. doi:10.1136/rmdopen-2015-000129
    www.eular.org
    for rheumatoid arthritis (RAID) and psoriatic arthritis (PsAID) (download pdf).
  • 2016: European Patients’ Academy (EUPATI)EUPATI is a pan-European project implemented as a public-private partnership by a collaborative multi-stakeholder consortium from the pharmaceutical industry, academia, not-for-profit, and patient organizations. The Academy was started, developed and implemented as a flagship project of the Innovative Medicines Initiative and continues to be led by the European Patients’ Forum (EPF). EUPATI has already trained 96 patient experts on medicines development, clinical trials, medicines regulations, health technology assessment. Additionally, EUPATI offers and maintains the Toolbox on Medicine Development, and coordinates a network of national platforms for patient advocates.https://eupati.eu offers and maintains the Toolbox on Medicine Research & Development and Patient EngagementLearn more about this tool at https://toolbox.eupati.eu/.
  • EUPATI coordinates the network of national platforms for patient advocates National Platforms bring patient, academic, and industry partners together to discuss patient education and patient involvement in medicines research and development (R&D). Working together, National Platforms raise awareness about the important role of patients, and members identify challenges and opportunities for joint action.
    https://www.eupati.eu/
    .

CoPI: Patient Research Partner (PRP)

Tools: Recommendations – patient researcher engagement; Instruments – patient-researcher engagement

Context: Patient-reported outcomes (PROs), Research & Development

Value-Based Health Care

Value-Based Health Care

2019: International Consortium for Health Outcome Measurement (ICHOM)International Consortium for Health Outcomes Measurement (ICHOM) aims to unlock the potential of value-based healthcare by defining global Standard Sets of outcome measures that matter most to patients and driving adoption and reporting of these measures worldwide to create better value for all stakeholders.
https://ichom.org
unites an international working group – including patients – to develop the Inflammatory Arthritis Standard Set (download pdf) to enable health care providers to implement the value-based health care framework and compare outcomes that are important to patients with inflammatory arthritis.  (Covers patients with rheumatoid arthritis, axial spondyloarthritis, psoriatic arthritis, and juvenile idiopathic arthritis.)

CoPI: Working groups

Tools: Guidance Documents – value-based healthcare

Context: Patient-Reported Outcomes (PROs), value-based health care, core outcome sets (COS)

2020

Pharmaceutical Companies Expand the Role of the Patient Advisory Panel

Pharmaceutical Companies Expand the Role of the Patient Advisory Panel
  • 2020: Bristol-Myers Squibb (BMS)We are a global biopharmaceutical company whose mission is to discover, develop and deliver innovative medicines that help patients prevail over serious diseases. www.bms.com initiates PEER (Patient Expert Engagement Resource) PEER ensures that the patient perspective is heard and considered at every step of the drug discovery and development process www.bms.com/life-and-science , an enterprise-wide approach that enlists the help of “expert” patient advocates to provide insights on drug development, clinical trials, lay summaries, regulatory, access/reimbursement, and policy discussions to accelerate and improve the delivery of therapies to patients.

CoPI: Advisory panels

Context: Lay summaries, regulatory process, clinical trials, Research & Development

Rheumatology Registries and Research Front and Center

Rheumatology Registries and Research Front and Center

With the onset of the global pandemic of COVID-19COVID-19 is the disease caused by SARS-CoV-2, the coronavirus that emerged in December 2019. www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus , rheumatology registries – come existing and some forming solely for this reason – began focusing strongly on tracking cases in rheumatology patients. Some of these registries included the patient voice in various phases of data collection.

  • 2020: COVID-19 Global Rheumatology Alliance (GRA)The mission of the GRA is to collect, analyze and disseminate information about COVID-19 and rheumatology to patients, physicians, and other relevant groups to improve the care of patients with rheumatic disease.
    rheum-covid.org/
    was developed to collect, analyze, and disseminate information about COVID-19 and rheumatology to patients, physicians, and other relevant groups to improve the care of patients with rheumatic disease. In addition to establishing a Patient Board, patients were invited to submit and review questions as part of the Patient Experience Survey and help develop lay summaries. International
  • 2020: The Arthritis & Rheumatic Disease COVID-19 Project From conception to development and launch, the Arthritis and Rheumatic Disease COVID-19 project included patients during all phases of the project, which began by learning about the impact of COVID-19 on people who are living with underlying chronic disease through multiple conversations. Patients also collaborated with researchers and clinicians to help develop and refine the survey, prioritize survey questions, provide input on the study timeline, and strategize on dissemination efforts.
    rheumcovid19project.org/
    – A patient-powered study of the Autoimmune Research Collaborative, from conception to development and launch, the Arthritis and Rheumatic Disease COVID-19 project included patients during all phases of the project. Respondents are asked to participate at multiple time points to better understand concerns, behaviors, and the pandemic’s overall impact on them over time. The study will also inform the preparedness of patients and clinicians for future pandemics and provide a better understanding of concerns with infection in general among patients with autoimmune disease. Led by Global Healthy Living Foundation/CreakyJoints. United States, Canada

CoPI: Advisory panel, working group, co-production of stakeholder groups

Context: Registries, lay summaries, dissemination (knowledge translation)

Health Equity and Diversity, Front and Center

Health Equity and Diversity, Front and Center
  • 2020: COVID-19 brought to light many inequalities in healthcare, including disparities based on socioeconomic factors and societal structure. In the United States, the realities of systemic bias and structural racism emerged, presenting the opportunity to increase efforts to advance health equity – and work to eliminate health inequities nationwide.
  • 2020: In November, for the first time at a scientific conference, the American College of Rheumatology (ACR) American College of Rheumatology (ACR) is a professional membership organization whose mission is to empower rheumatology professionals to excel in their specialty. They are committed to improving the care of patients with rheumatic disease and advancing the rheumatology subspecialty.
    www.rheumatology.org/
    Convergence virtual meeting included a track dedicated to diversity, inclusion, and racial disparities. Session topics and abstracts focused on unconscious bias, racial barriers to care, and LGBTQ+ community education. Persons living with rheumatic diseases were included in many presentations and actively participated in coordinating online chats.

Abstract: Impact of the COVID-19 Pandemic on Racial and Ethnic Minority Groups Diagnosed with Rheumatic Disease (download pdf)Presented by the COVID-19 Global Rheumatology AllianceCOVID-19 Global Rheumatology Alliance (GRA) aims to collect, analyze and disseminate information about COVID-19 and rheumatology to patients, physicians and other relevant groups to improve the care of patients with rheumatic disease. Their vision is to bring together the global rheumatology community to curate and disseminate accurate and comprehensive knowledge to advance rheumatology care in the COVID-19 pandemic.https://rheum-covid.org/

 

CoPI: Conference participant

Tools: Report – health equity

Contexts: Registries

Break Out Pathways

Would your work benefit by viewing smaller, topic specific pathways?  View our condensed Pathways, grouped by Historic Milestones, Novel “Firsts”, Stakeholder Group, Location, or Tool.

By Tool
Resources to help stakeholders who design patient-researcher collaborative projects.
By Novel "Firsts"
These entries highlight initiatives that were 'firsts' and, as a result, influenced patient engagement in the rheumatology research space. Those designing projects reference these for inspiration, examples, or building blocks.
By Location
Currently items on the Pathway are listed by continent (Europe), country (United States, Canada), or international. As we receive more pivotal projects that shaped patient engagement in rheumatology in other locations, these will be added.