Navigating Research Partnerships that Include Patients with Serious - PowerPoint PPT Presentation

Navigating Research Partnerships that Include Patients with Serious Acute or Medically Complex Conditions Courtney Clyatt, MA, MPH Program Officer Pipeline to Proposal Program Shivonne L. Laird, PhD, MPH Program Officer Eugene Washington PCORI Engagement Awards Program 1

Today’s Webinar • Background on the importance of engagement in patient-centered research • Some considerations as you prepare for an engaged research project • Examples from researchers and patient research partners • Summary of lessons learned 2

Why Engage? To influence research to To establish trust and To encourage successful be patient-centered, a sense of legitimacy uptake and use of relevant, and useful in research findings research results

PCORI Funds Research That… What we mean by… “Patient - centeredness” • The project aims to answer questions or examine outcomes that matter to patients within the context of patient preferences • Research questions and outcomes should reflect what is important to patients and caregivers “Patient and stakeholder engagement” • Patients are partners in research, not just “subjects” • Active and meaningful engagement between scientists, patients, and other stakeholders • Community, patient, and caregiver involvement already in existence or a well-thought-out plan

PCORI Funds Patient-Centered Outcomes Research PCOR is a relatively new form of CER that…. • Considers patients’ needs and preferences, and the outcomes most important to them • Investigates what works, for whom, under what circumstances • Helps patients and other healthcare stakeholders make better-informed decisions

Engagement as a Path to Useful, High-Quality Research Topic Selection Proposal Review; and Research Design and Conduct of Prioritization Research Dissemination and Implementation of Evaluation Results

Who Are Our Stakeholders? Caregivers/Family Members Clinicians Payers Purchasers Policy Makers Patients/Consumers Industry Hospitals/Health Systems Training Institutions Patient/Caregiver Advocacy Organizations 7

Our Engagement Rubric Provides practical guidance to applicants, merit reviewers, awardees, and engagement/program officers on effective engagement in research • Planning the Study: How patient and stakeholder partners will participate in study planning and design • Conducting the Study: How patient and stakeholder partners will participate in the conduct of the study • Disseminating the Study Results: How patient and stakeholder partners will be involved in plans to disseminate study findings and ensure that findings are communicated in understandable, usable ways • PCOR Engagement Principles: Reciprocal relationships, co-learning, partnership, trust, transparency, honesty

PCORI research partners change the research Provide personal perspectives ( e.g., priorities, experiences ) Give guidance to improve research project processes and materials (e.g., outcomes studied, recruitment strategies) Active participation in conduct and dissemination (e.g., recruiting participants, collecting data, presenting results) Note: Data from annual awardee report and Patient and Stakeholder WE-ENACT. 14 258 responses from awardees, 254 responses from partners

Pipeline to Proposal Awards (P2P) • Mission: The P2P program aims to build a national community of patient, stakeholder, and researcher partnerships that have the expertise and passion to participate in patient-centered outcomes research within their communities that leads to high-quality research. In addition, the P2P program is a funding mechanism to develop and strengthen the engagement in proposals submitted for funding . • Purpose: Build capacity and cultivate the development of proposals with sound scientific rigor and robust patient engagement .

P2P Program Team PCORI Program Team Pipeline Award Program Offices Michigan Public Health Institute Health Resources in Action Colorado Foundation for Public Health and the Environment Georgia Health Policy Center Courtney Clyatt Melanie Thompson National Network of Program Officer Senior Program Associate Public Health Institutes cclyatt@pcori.org mthompson@pcori.org Projects that cover more than one region are housed under the National Program Office

P2P Awards Strengthen the PCORI Research Enterprise . PCORI Research Process Pre- Implement Disseminate Study Conduct Study Plan Study planning Study Results Results 1) P2P helps foster 2) It has been shown that capacity building for when patient partners are PCOR in the community engaged early on and before a study plan is throughout the research even developed. This process, they are more enables likely to help in the underserved/minority implementation and and otherwise “missing” dissemination of study communities to actively results in their engage in the research communities. process.

Mitigating Challenges 13

Governance Document • Describe how your partnership will work as a team throughout the research process, from planning to dissemination; • Identify roles of partners and expectations at each level (i.e. subcommittees, workgroups, etc.); • Include contributions from all project stakeholders; • Describe how often participants will meet, how they will contribute to the partnership, how lack of participation will be addressed, etc.; • Describe how all partners engage and have equal contribution in decision-making and strategic planning; • Describe how decision will be made, who is responsible for making various decisions and; • Describe what protocols will be used to ensure transparency and inclusivity. Examples of decision-making styles and structures include consensus, voting, weighting decisions, etc. 14

Sharing responsibilities • After your project team has identified the roles of the key stakeholders involved in the project, your project team can determine things like: o Will there be a project co-lead with a clearly defined role? o Who will be responsible for communicating with the funder? o Who will be responsible for gathering information for reports to the funder? o Who will be responsible for submitting reports to the funder? 15

Creative ways for meeting or communicating with your project team • Message Boards • Twitter Chat • Facebook • Town halls

Examples from Practice: We’ll Take the Village: Engaging Establishing a Patient-Centered the Community to Better Health Research Community for Cystic Fibrosis Project Lead: Mary Bentley LaMar Project Lead: Ronnie Sharpe 17

We’ll Take The Village: Engaging The Community To Better Health Engagement Processes From A Community Based Perspective PCORI Webinar OCTOBER 17, 2017 Mary Bentley LaMar, Founder & Executive Director Beverly Lucas, Patient Partner The Sickle Cell Association of New Jersey 18

To keep the team engaged we . . . • Allow the village to see the fruits of their labor by providing regular updates on the project’s progress • Keep the team Informed of the next steps • Continuously reinforce the idea that PCORI really wants to hear what we have to say • Acknowledge Individual efforts of team members publicly in our newsletter, via social media and at scientific conferences • Allow/encourage everyone to speak and all thoughts are respected and recorded • Educate on CER to help everyone understand the project 19

Some of the meetings and town halls were held at events that were fun and educational. 20

Challenges • Illness • Trust • Research is unfamiliar territory • Child care/ Family obligations • Transportation • Handicap Friendly 21

To Meet The Biggest Challenge We. . . Listened to our patient population. They identified the use of technology as the key to staying involved and engaged. Established a Village Advisory Committee. Created “The Village,” a space for a larger community of stakeholders to get involved. Established written Operations Guidelines to formalize the governance of the project. 22

You Can Get There From Here 23

Thank You! The Sickle Cell Association of New Jersey www.sicklecellnewjersey.org P.O. Box 9501 Newark, New Jersey 07104 info@sicklecellnewjersey.org 973 482-9070 24

Eugene Washington PCORI Engagement Awards Team Shivonne L. Laird, PhD, MPH Yasmeen Long, MA Lia Hotchkiss, MPH Alicia Thomas, PhD, MHS Program Officer Program Officer Director Program Officer Rachel Mosbacher, MPA Ivey Wohlfeld Ashley Freeman Program Officer Senior Program Associate Program Associate 38