Patient Engagement from the Researcher s Perspective

Transcription

1 Patient Engagement from the Researcher s Perspective Conflict of Interest and Disclosures Monique A.M. Gignac, PhD has none. Monique A.M. Gignac, PhD Associate Scientific Director & Senior Scientist, Institute for Work and Health; Affiliate Scientist, Toronto Western Research Institute, University Health Network; Professor, Dalla Lana School of Public Health, University of Toronto, Toronto, Canada mgignac@iwh.on.ca 2 Patient Engagement in Research from the Researchers Perspective...is the term patient appropriate? Patient? Consumers? Citizens? Citizen Engagement? Research Ambassadors? 3 4

2 Presentation Objectives 1. Highlight the importance of researchers and people living with arthritis negotiating their roles early in the research process and regularly 2. Illustrate the diverse ways that people with arthritis and researchers can work together. 3. Discuss the importance of: a. A common agenda b. Learning one another s language c. Understanding research timelines 5 Key Audiences/stakeholders identified; relationships built for ongoing KTE Knowledge transfer planned/delivered with audiences/stakeholders Knowledge may be transferred to specific audiences Audiences/stakeholders assist in translating research knowledge for practice Reports written, published; may be presented Conclusions Drawn Research Themes Focus Work Specific research questions posed Studies Designed Data collected Data analyzed Audiences/stakeholders may contribute to design, data collection, analysis Audiences/stakeholders input helps to focus research questions Courtesy of the Institute for Work & Health (IWH), Toronto, Canada, 2004 Networks & Research Teams Canadian Arthritis Network (CAN) Funding for large networks is becoming increasingly common May be national/international, multi-disciplinary and multi-sectoral Funders expect a high degree of knowledge translation and relevance to stakeholders Research and Training program Active from 1998 to years of legacy funding ( ) 7 8

3 Canadian Arthritis Network (CAN) Research aimed at: 1. Better understanding the causes of arthritis 2. Developing and evaluating new treatments, therapeutics and interventions 3. Population and community health research Canadian Arthritis Network (CAN) Research aimed at: 1. Better understanding the causes of arthritis 2. Developing and evaluating new treatments, therapeutics and interventions 3. Population and community health research...involved nearly 200 researchers and ~ 1,000 collaborators and partners 9 10 Can Consumer Model 1. Governance of the Network (e.g., Consumer Advisory Council (CAC); Research Management Committee; Board of Directors) 2. Strategic planning 3. Training with researchers 4. Creation of information and tools 5. Members of grant projects, grant review committees and trainees/student review panels 6. Training the next generation of researchers 7. CAN Annual Conference 8. Outreach (e.g., CAN Cares public forums) Lessons Learned A successful relationship takes effort and resources 11 12

4 Lessons Learned Lessons Learned It s critical to articulate a common agenda and vision Other stakeholders listen to patients (e.g., research funders, industry, government, clinicians) Research and advocacy agendas don t always mix well Take time to develop a shared language and messages The tentative language of research can create frustration among researchers and consumers in moving forward Lessons Learned Lessons Learned: Time The grant process is becoming increasingly long and arduous Time: Why does is take sooooooo long to do research? It can be difficult for researchers and consumers to sustain their interest in a research project over time The honeymoon period cools rapidly with the work and time needed for data collection and analysis Publication needs can delay getting the messages out There s always another study

5 And yet The researcher-citizen relationship often works extremely well Finding the right consumers isn t always easy Need to make an effort to hear from diverse groups of people with arthritis Need to include other types of stakeholders Next Speaker Amye L. Leong, MBA Bringing people together is not the same as keeping people together Expect changes in your relationships Thank you! mgignac@iwh.on.ca

6 2016 ACR/ARHP Webinar 28 February 2016 Nothing About Us Without Us: Engaging Patients in Rheumatology Research Conflict of Interest and Disclosures Amye Leong, MBA, has nothing to disclose. Amye L. Leong, MBA President & CEO, Healthy Motivation; Director of Strategic Relations, Bone and Joint Decade, the Global Alliance for Musculoskeletal Health; Chair, Leadership Board, Arthritis Foundation CA Central Coast; OMERACT Patient Research Partner Leader Key References and Resources 1. Domecq, Juan et al. Patient engagement in research: a systematic review. BioMed Central Open Access, February The Early Days: What Did Patient Engagement Look Like? 2. Bykerk V, Furst D, Leong A, et al. Establishing a Core Domain Set to Measure Rheumatoid Arthritis Flares: Report of the OMERACT 11 RA Flare Workshop. J Rheumatol: 2014, Mar; via online de Wit, Maartin et al. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ Open 2013;3:e doi: /bmjopen Outcome Measures in Rheumatology Mullins, D. et al. Continuous patient engagement in comparative effectiveness research. JAMA. 2012;307(15): Canadian Foundation for Healthcare Improvement. Patient and family engagement Bingham CO 3rd, Alten R, Bartlett SJ, Bykerk VP, Brooks PM, Choy E, ChristensenR, Furst DE, Hewlett SE, Leong A, May JE, Montie P, Pohl C, Sanderson TC, Strand V, Woodworth TG; OMERACT RA Flare Definition Working Group. Identifying preliminary domains to detect and measure rheumatoid arthritis flares: report of the OMERACT 10 RA Flare Workshop. J Rheumatol Aug;38(8): Leong, A., Euller-Ziegler, L. Patient Advocacy and Arthritis: Moving Forward, Bulletin of the World Health Organization Feb; 82(2): E-pub 2004 Mar 16, Rheumatology Patient Engagement 2002

7 Patient Engagement Today International Cochrane Systematic Reviews OMERACT Patient Research Partners since 2002 Regional EULAR Guidelines & EULAR Network of PRPs National INVOLVE: UK s National Health Service Canadian Foundation for Healthcare Improvement USA: PCORI, NIH, AHRQ, FDA & C-PATH: PROMIS Commercial Industry... And growing... OMERACT PRPs in Malaysia 2010 Common language = EXPERIENCE with Rheumatic Disease Concordance Discordance with HCPs EXPERTISE The Experience of Patient Engagement The Experience of Patient Engagement

8 The Experience of Patient Engagement Selection (geographical, diversity, disease duration, severity, skills, etc.) The Experience of Patient Engagement Selection (geographical, diversity, disease duration, severity, skills, etc.) Mutual training & preparation: Glossary for HPs and patients The Experience of Patient Engagement Selection (geographical, diversity, disease duration, severity, skills, etc.) Mutual training & preparation: HPs and patients Logistics support: patient-to-patient, HP-patient The Experience of Patient Engagement Selection (geographical, diversity, disease duration, severity, skills, etc.) Mutual training & preparation: HPs and patients Logistics support: patient-to-patient, HP-patient Organizational support (recruitment, strategy, fundraising)

9 The Experience of Patient Engagement Selection (geographical, diversity, disease duration, severity, skills, etc.) Mutual training & preparation: HPs and patients Logistics support: patient-to-patient, HP-patient Organizational support (recruitment, strategy, fundraising) Dissemination: authorship, presentations The Experience of Patient Engagement Selection (geographical, diversity, disease duration, severity, skills, etc.) Mutual training & preparation: HPs and patients Logistics support: patient-to-patient, HP-patient Organizational support (recruitment, strategy, fundraising, etc.) Dissemination, authorship, presentations Feedback, continuous improvement The Experience of Patient Engagement Selection (geographical, diversity, disease duration, severity, skills, etc.) Mutual training & preparation: HPs and patients Logistics support: patient-to-patient, HP-patient Organizational support (recruitment, funding, outreach, etc) Dissemination, authorship Feedback, continuous improvement Patient Engagement: What It Looks Like

10 PCORI Focused Resources Online RESOURCES 1. Domecq, Juan et al. Patient engagement in research: a systematic review. BioMed Central Open Access, February Bykerk V, Furst D, Leong A, et al. Establishing a Core Domain Set to Measure Rheumatoid Arthritis Flares: Report of the OMERACT 11 RA Flare Workshop. J Rheumatol: 2014, Mar; via online OMERACT 3. de Wit, Maartin et al. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ Open 2013;3:e doi: /bmjopen CISCRP Research Involvement and Engagement (open source) 4. Outcome Measures in Rheumatology Mullins, D. et al. Continuous patient engagement in comparative effectiveness research. JAMA. 2012;307(15): Canadian Foundation for Healthcare Improvement. Patient and family engagement Bingham CO 3rd, Alten R, Bartlett SJ, Bykerk VP, Brooks PM, Choy E, ChristensenR, Furst DE, Hewlett SE, Leong A, May JE, Montie P, Pohl C, Sanderson TC, Strand V, Woodworth TG; OMERACT RA Flare Definition Working Group. Identifying preliminary domains to detect and measure rheumatoid arthritis flares: report of the OMERACT 10 RA Flare Workshop. J Rheumatol Aug;38(8): Leong, A., Euller-Ziegler, L. Patient Advocacy and Arthritis: Moving Forward, Bulletin of the World Health Organization Feb; 82(2): E-pub 2004 Mar 16, T h a n k y o u!!! Next Speaker M. Suzanne Schrandt, JD Nothing About Us Without Us: Engaging Patients in Rheumatology Research Amye L. Leong, MBA President & CEO, Healthy Motivation; Director of Strategic Relations, Bone and Joint Decade, the Global Alliance for Musculoskeletal Health; Chair, Leadership Board, Arthritis Foundation CA Central Coast; OMERACT Patient Research Partner amye@healthymotivation.com 40

11 41 Conflict of Interest and Disclosures M. Suzanne Schrandt, JD Patient Engagement Through all Stages of Research M. Suzanne Schrandt, JD Deputy Director of Patient Engagement Discloses activities with other organizations such as: Arthritis Foundation, Rheumatoid Arthritis CME and Patient Partners in Arthritis, 6 42 Our Mission Our Review Criteria PCORI helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community. During a rigorous merit review process, proposals are evaluated to assess: Impact of the condition on health of individuals and populations Potential for improving care and outcomes Technical merit Patient-centeredness Patient and stakeholder engagement

12 We Engage Patients and Other Stakeholders at Every Step The Engagement Rubric Topic Selection and Research Prioritization Merit Review The rubric is intended to provide guidance to applicants, merit reviewers, awardees, and engagement/program officers (for creating milestones and monitoring projects) regarding patient and stakeholder engagement in the conduct of research. It is divided into four segments: Planning the Study Conducting the Study Evaluation Study Design/ Implementation Disseminating the Study Results PCOR Engagement Principles Planning the Study Conducting the Study Diabetes study: Clinicians who reviewed the initial study design indicated that clinical practice is quite variable and suggested that a three-arm approach would be more appropriate for the study. The study design was revised accordingly. Cancer study: Patient partners determine eligibility requirements for study inclusion. Chronic pain study: The informed consent document is developed with patient partners to make it understandable to study participants. Chronic pain study: Patients and clinicians revise and shorten survey tool. Preeclampsia study: Study team will recruit via a national network of local health departments and community health centers, as well as a preeclampsia advocacy group s website, and Facebook page.

13 Disseminating the Study Results Engagement Principles Chronic Trauma study: The research team will convene a policy summit with relevant professional societies during the third year of the study to focus on identifying ways to speed the implementation of findings into practice. Neurology Study: Patient partners will co-present at large patient advocacy organization summit. Chronic Sain Study: Patient partners co-author manuscripts, present at scientific and lay conferences, and share study findings through their networks. Compensation for patient partners is included in the budget at an appropriate level. Meetings are held at a time and in a location that that accommodates patient and stakeholder partners. Compensation is provided for transportation and related expenses. Training and educational opportunities are provided, for patient, stakeholder, and researcher partners such as training in human subjects protection. Putting the Rubric to Work Engagement Officers: Role and Responsibilities Greater understanding of engagement Stronger engagement in proposals Strong engagement during research? Position that parallels the Program Officer role Partners with Program Officers and research teams to oversee and cultivate engagement throughout the life of the project Ensures robust engagement is integrated into projects from time of contract formation Participates in ongoing project management activities Available for assistance and discussion Gleans promising practices from projects to share and replicate

14 Additional Resources Find Us Online Compensation Framework, Engaged-Research-Partners.pdf Sample Engagement Plans, WE-Enact tool and data, WE-ENACT-Slides pdf Association of Rheumatology Health Professionals Thank you for participating! Questions: 55