Sustaining Partnerships for Patient-Centered Outcomes Research AcademyHealth 2018 Annual Research Meeting June 25, 2018
Welcome & Introductions Kristin L. Carman, PhD Courtney Clyatt, MA, MPH Lia Hotchkiss, MPH Julie K. Lesch, MPA Director Program Officer Director Engagement Officer Public & Patient Engagement P2P Awards Program Engagement Awards Program Public & Patient Engagement Danielle C. Lavallee, PharmD, PhD Janice Tufte Research Associate Professor Patient Co-Investigator University of Washington Hassanah Consulting PCORI Ambassador PCORI Ambassador 2
Session Objectives 1 Identify promising practices in the engagement of public and patients in comparative effectiveness research. 2 Define effective strategies for achieving sustainability in PCOR partnerships. 3
Agenda • Welcome & Introductions • About PCORI and Engagement • Lessons from the different stages of engagement in project lifecycles at PCORI • Project Investigator & Project Partner Reactions / Q&A 4
About Us • An independent research institute authorized by Congress in 2010 and governed by a 21-member Board of Governors representing the entire healthcare community • Funds comparative clinical effectiveness research (CER) that engages patients and other stakeholders throughout the research process • Seeks answers to real-world questions about what works best for patients based on their circumstances and concerns 5
Our Mission and Strategic Goals PCORI helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community. Our Strategic Goals: Increase quantity, quality, and timeliness of useful, trustworthy research information available to support health decisions Speed the implementation and use of patient-centered outcomes research evidence Influence research funded by others to be more patient-centered 6
Who Are Our Stakeholders? Patient/ Consumer Industry Policy Maker Payer Clinician PCORI Community Hospital/ Health Purchaser System Patient/ Caregiver/ Caregiver Family Advocacy Member of Org Patient Training Institution 7
Engagement: Ensuring Patient/Stakeholder Partnership Patients and stakeholders from across the entire • healthcare enterprise are actively and meaningfully involved in the entire research process — from the development of research priorities to the dissemination and uptake of research findings. Patients are treated as partners in research, not just • “subjects.” To achieve critical goals: • • To influence research to be patient-centered, relevant, and useful • To establish trust and a sense of legitimacy in research findings • To encourage successful uptake and use of research results 8
Where We Engage Partners: Engagement in Research 9
Engagement as a Path to Useful, High-Quality Research Topic Selection Proposal Review; and Research Design and Conduct Prioritization of Research Dissemination and Evaluation Implementation of Results 10
Setting The Stage • We are exploring sustainability, including how to define it • Our data and information is practice based and exploratory • We expect your experiences and knowledge will broaden and even challenge our understanding 11
Developing Sustainable Partnerships: Pipeline to Proposal Awards Program (P2P) Courtney Clyatt, MA, MPH Program Officer, Pipeline to Proposal Awards Program
Engagement in Research 13
Pipeline to Proposal Program Objective: To build a national community of patient, stakeholder, and researcher partnerships with the goal of developing high-quality research proposals to address the health issues affecting their communities. Strengthen Develop partnerships Create a high- partnerships between Funded among researchers, quality research that unlikely patients and PCOR/CER results in candidates to other proposal with desired health a strong identify health stakeholders outcomes for issues/CER to create a engagement patients in ideas that PCOR/CER plan that their leads to… affect their question to community community address the health issue Reciprocal Relationships ~ Co-learning ~ Partnership ~ Trust ~ Transparency ~ Honesty 14
Strategize for Sustainability Create a Business Plan • • Agree on mission • Define roles and expectations • Allow for flexibility, partnerships often change Focus on Building Lasting Partnerships • • Address power dynamics up front • Support project team members’ needs Don’t Put all Your Eggs in One Basket • • There is never a big enough basket • Baskets break ... or change 15
P2P Deliverables: Building Toward Sustainability Key Components of Pipeline to Proposal What Happens a Business Plan Deliverables Identify partners – stakeholder mapping • Strategize partnership engagement • Management Expand partnership to include state, regional and national • Partnership and personnel organizations Identify individual strengths to help with work • Formalize relationship • Develop a mission statement and vision • Business description Identify and develop infrastructure • Governance Document and structure Define roles and expectations • Decide how decisions are made • Recruitment/ Create a five-minute elevator pitch, why others should join your • Executive Summary partnership and the benefit to them Communication Plan Research Question Conduct a landscape assessment • Market research and Development and Identify research question and why and how your team is best • strategies Prioritization posed to answer this question Create a shared understanding of sustainability • Identify potential funders • Financial documents Sustainability Plan Look at risks to partnership funding and additional opportunities • for funding 16
Create a Business Plan for Your Research Partnership Align the Team • All partners must share the same base knowledge of the project, and goals must be clearly defined and understood by all partners upfront • This creates a sense of informed and shared vision for the project and allows everyone’s opinions and voice to be heard and weighed with the same importance • Project team developed fact sheets around 6 potential research questions, which were used at meetings • Allowed patients, their family and other members of the project team to have rich discussions about the research topics/questions Prepare for Change • Projects with leaderships transitions have used the roles identified in the governance document • Teams were able to parcel out the project lead’s duties to other members of the team, and the projects were able to move forward without interruption “The governance document really helped partners purposely think of the kind of structure they wanted. This document was helpful for ensuring the patient voice was incorporated into any decisions … The governance document also was a mechanism to be purposeful on recruiting and onboarding any new members” 17
Focus on Building and Developing Lasting Partnerships Level the Playing Field • Project teams addressed the power dynamics among members and language/jargon barriers by: • Establishing ground rules and meeting norms to create a safe space • Acknowledging that everyone was an equal contributor and brings their own set of experiences • Maintaining a first name policy and making sure no titles were used Understand Partners’ Culture and Needs • Veteran’s Suicide Protection Advisory Group initially offered gift cards to military families; however, this was seen as soliciting and it was questionable whether or not this was allowed on base • Instead of paying Advisory Group members for their participation, they received a challenge medal, which was more consistent with military culture • Advisory Group members would often bring their support animals to meetings • In order to support animals’ attendance at the meeting, the project team modified their budget to cover the cost of dog food and chew toys “Partnership building requires patience and empathy. I use the word empathy to specifically describe the ability to look at the project from your partners’ perspectives. That will help facilitate progress.” 18
Diversify Funding Streams Look to Your Network • A patient project lead used his already established online community to crowdfund monies to support the collection of pilot data for their research question • Used the funding, with support from researchers at the Mayo Clinic, to collect pilot data Seek Additional Funding to Continue to Grow Research Partnerships (if needed) • As their P2P project drew to a close, a patient advocacy organization recognized that they needed to continue their engagement work to reduce childhood obesity among American Indian and Spanish- Speaking Families • Sought funding from the Eugene Washington PCORI Engagement Awards which helped them engage 12 new community-based partners in developing research partnerships 19
Sustaining Engagement: Eugene Washington PCORI Engagement Award Program Lia Hotchkiss, MPH Director, Engagement Award Programs
Engagement in Research Engagement Awards — building patient and stakeholder capacity to engage in these activities 21
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