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. After morphing into the Alliance for the Canadian Arthritis Program (ACAP) in 2012, then Alliance for Arthritis in in Canada (ACC), the group was disbanded in 2019. 
• 2000: 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 established 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

• 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)

• 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 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 “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

Patients, care partners, and patient groups involved in patient engagement activities should be compensated as lived experience experts. Over the years, as more patient voices in research have emerged, various levels of expertise have also evolved. What should you pay these engagement partners for participation in your project?

• 2019: National Health CouncilThe National Health Council provides a united voice for the 160 million people living with chronic diseases and disabilities and their family caregivers. nationalhealthcouncil.org (United States) publishes a Fair-Market Value (FMV) Calculator to determine compensation based on level of expertise. View Patient Engagement Activities Framework document guide .
• 2018: Canadian Arthritis Patient Alliance (CAPA)Canadian Arthritis Patient Alliance (CAPA) works to improve access to medications, health care professionals, and services, Increase patient involvement in arthritis research and policy agendas, and understand and influence research and treatments. arthritispatient.ca and the Rare Disease FoundationRare Disease Foundation is led by rare disease patients, caregivers, researchers, and practitioners who share the same sense of urgency and values about access to resources and research for rare disease patients and their families. rarediseasefoundation.org (Canada) defining core principles behind compensation, outlining how to put those principles into practice in a valid, credible manner that honors and values the contributions of patients and families whether in quality improvement or health research.
  • 2020: Canadian Arthritis Patient Alliance (CAPA) and the Rare Disease Foundation (Canada) publish additional practical recommendations related to compensation for Patient Research Partners (PRPs).
• Some groups, like Outcome Measures in Rheumatology (OMERACT)Outcome Measures in Rheumatology (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, are all volunteer organizations. In these cases, when other stakeholders are also donating their time, it is acceptable to expect patient partners to donate their time, too.

CoPI: Patient Research Partners
Tools: Recommendations – compensation
Context: Compensation

While patient engagement as partners in rheumatology research has been a staple at scientific conferences in both Europe and Canada for years, until 2022, the topic has had little focus at US-based scientific research conferences.

• 2022: The ACR Convergence meeting features the 1st scientific session of its kind to help attendees improve patient involvement as partners in their research projects. Presentation of this Pathway of Patient Engagement in Rheumatology Research Tool designed by the ACTion Council.
• Attendees – including researchers, rheumatologists, patient research partners, and representatives from scientific societies, patient organizations, and industry – worked together post session to build out the tool to create the most robust repository of patient included rheumatology research to date. (TBD)

Tags

CoPI: Patient Research Partner, conference participant, Co-production of stakeholder groups

Tools: Instruments – Patient-Researcher Engagement

Context: Research & Development