patient and family advisory councils (pfacs) as partners in … · 2020. 3. 25. · effectively...
TRANSCRIPT
Patient and Family Advisory Councils (PFACs) as Partners in Research: Driving Toward Outcomes that Matter
Sue Sheridan, MBA, MIM, DHLDirector, Patient Engagement
PCORI
Are We Willing to Tip the World Upside Down…Just a Bit?
Overview
•What are PFACs?
•What is Patient-Centered Outcomes Research (PCOR)/PCORI?
•What is the role of PFACs in the planning, conduct and dissemination of Patient-Centered Outcomes Research (PCOR) in healthcare systems?
•Examples of PFACs engaging in PCORI funded research
•Tools to help support the engagement of PFACS in research
•Foundational elements, actions and anticipated outcomes for those healthcare systems who engage PFACs inresearch.
What are Patient and Family Advisory Councils (PFACs)?
What is PCOR?
Role of PFACs in Research
Harlan video
Why Engage Patients and Stakeholders in Research?
To establish trust and a sense of legitimacy in research findings
To encourage successful uptake and use of research results
To influence research to be patient-centered, relevant, and useful
An Integrative Multilevel Study for Improving Patient-Centered Care Delivery among Patients with Chronic Obstructive Pulmonary Disease
Hanan J. Aboumatar, MD, MPH,Johns Hopkins University, Baltimore, MD
Comparative Effectiveness of Intravenous vs. Oral Antibiotic Therapy for Serious Bacterial Infections
Ron Keren, MD, MPH,The Children's Hospital of Philadelphia
Philadelphia, PA
Does Engaging Patients in Research Make a Difference?
Patient/Stakeholder Perspective (subject matter expert)
“Brought an additional level of awareness of patient/caregiver needs that could have been overlooked.”
Awardee Perspective
“Our patient co-investigators emphasized the importance of home time, or days spent alive and out of the hospital after stroke. As a result, we made this one of our primary outcomes for comparison. We also …measur[ed] patient reported outcomes including fatigue, depression, functional status,
and quality of life in addition to more traditional clinical
outcomes like readmission and mortality.”
Impact of Engagement:Choosing Outcomes and Deciding How to Measure Them
Patient/Stakeholder Perspective (patient/consumer)
“I think the other researchers gained insights into the patient's needs, frustrations, and motivations.”
Awardee Perspective
“As members of the research team, patient stakeholders were key to the development of the survivorship care plan tool (intervention) and measures of effectiveness. Their involvement has ensured a truly patient-centered tool and relevance of potential findings to the patient audience.”
Impact of Engagement:Choosing or Designing Interventions or Comparators
Tools and Resources
PCORI Support and Resources to Build Partnerships, Infrastructure, Capacity and
Community
Training and Tools:
• Team Science
• Research 101
Engagement Development Funding:
• Eugene Washington
Engagement Awards
• Pipeline to Proposal Awards
Networking, Learning and Sharing:
PCORI Ambassadors
Helping us to understand how PFACs receive and make use of PCOR (Planetree)
Improving the capacity of PFACs to engage meaningfully in PCOR (Health Care for All)
Creating a framework to provide researchers with a blueprint to effectively engage PFACs in research (Fagan)
Developing tools to support awareness and use of PCOR by PFACs in the future (Planetree)
Raising awareness about how PFACs have been and can be involved in PCOR (IPFCC)
Eugene Washington Engagement Awards:Supporting PFAC Involvement in PCOR
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Continuum of PFAC Engagement in Research
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Implementing a Pragmatic Framework for Authentic Patient–Researcher Partnerships in Clinical Research
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J Comp Eff Res. 2016 May;5(3):297-308. doi: 10.2217/cer-2015-0023. Epub 2016 May 4.
Implementing a pragmatic framework for authentic patient-researcher partnerships in clinical research.
Fagan MB1, Morrison CR1, Wong C1, Carnie MB1, Gabbai-Saldate P2.
What building blocks are important?What do I need to do?What will the benefit be?
PFACs as Partners in Research
Foundational Elements for Healthcare Systems when Engaging PFACs in PCOR
(Based on conceptual model for PCOR)
Leadership, leadership, leadership (the will)
Awareness of PCOR and methods
Valuing the patient perspective
Ways for researchers and PFACs to partner
Resources and infrastructure
Policy and governance
Key Actions when Engaging PFACs in PCOR
Initiate and maintain partnerships between researchers and PFACs (facilitate communication)
Capture, use and optimize patient perspective across phases of research
Ensure meaningful influence on research
Train for partnering (both PFACs and researchers)
Evaluate the near term and long term impact
Share and use learnings
Anticipated Outcomes when Engaging PFACs in PCOR
Culture of patient-centeredness in research
Meaningful and effective partnerships
Research relevant to patients and others
Use of research results in decision making
Quality health decisions
Satisfaction with healthcare experiences
Optimal health outcomes
Key Consideration when Engaging PFACs in PCOR
Willingness to tip the world upside down…just a bit.
2424
Patient Engagement in ResearchInterest is Rapidly Growing
–Defined as a priority for comparative effectiveness research by the Institute of Medicine (2009)
–Exemplified by PCORI’s Engagement Imperative (2013)
–CMS Patient and Family Engagement Metrics
–Recognized in the international setting (WHO, Canadian Institute for Healthcare Research, National Institute Healthcare Research-(UK)
