A group of 28 patients and primary care practitioner teams came together at the Marriott Marquis Time Square in New York City for a full day preconference. The purpose was to explore how to engage with each other around health research and/or be advocates to advance primary care, be it through enhanced practices, policy changes or funding needs.
Ned Norman gave the patient/community perspective to the group of dyads. His 4 key messages to the group were to "Trust the Process"--of the day and the group; Find Your Voice and not be to afraid to ask questions, engage in conversations and share ideas; It Requires Patience (with a “c” not a “t”) to work in the world of patient and community engaged research; and Get Involved and Stay Involved.
Perry Dickinson provided an overview of what primary care is and what the Patient Centered Medical Home is working to accomplish. Part of this discussion addresses the “brokenness of the health care system” from the perspective of where money is spent as compared to were care is provided.
At the end of the day, participants, specifically those who were returning from last year gave an incredible list of accomplishments over the last year. Some highlights included
The afternoon was dedicated to learning about the research focus at PCORI with specific focus on patient engagement and primary care. In 3 presentations, we learned about Comparative Effectiveness Research from David Hickam, the Pipeline to Proposal Awards from Courtney Clyatt and the merit Review Process from Tsahai Tafari. We are all encouraged to become merit reviewers for PCORI as part of our engagement and voice.
Jumping off from this presentation, Valerie Gilchrist walked the group through an interactive speed dating style process addressing 4 questions about Primary Care. Then 4 teams of participants gathered all the answers to a single question and decided on the Truths, Trends and Unique Ideas. The Truths were answers that felt most relevant and shared by the largest numbers of respondents.
“Anyone can be an advocate if he has passion and is true to himself.” Marci Neilsen, PhD, discussed the role of advocacy and helped frame this idea for the dyads. She believes in the power of telling a story and that sometimes advocacy is simply about “informing” the conversation. The patient/provider story is critical especially it helps illustrate how cost effective and health effective it is. In fact, she encouraged the idea of the “medical community” which included schools, churches, public health, rec centers and employers to be part of the conversation. Primary Care is no more relevant than right now. In fact, Marci states that Primary Care is the “it girl” in public policy right now.
Before heading into an afternoon of information about PCORI, Nancy MacLellan provided an overview of the landscape of patient-engaged research in Canada. The Canadian Institute of Health and Research has created a vast network of multi-layered collaboratives with their Strategy of Patient Oriented Research system. With patients involved at all levels, SPOR is focusing on Research, Networks, building Capacity for stakeholders (patents), Clinical Trials and Patient Engagement. SPOR is working to change the culture of research because they feel it is a moral obligation. This process will increase credibility, increase relevance and applicability within Canada and has been incredibly active in the last 18 months.
- Providing AHRQ and PCORI research priorities from NAPCRG
- Receiving the Eugene Washington Grant from PCORI
- Creating a new Strategic Plan with Patient involvement and building in increased capacity for patient and clinical involvement with in NAPCRG including membership on the board.
- One dyad advocated on DC at the federal level.
- The People’s Choice Award was created