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By Janice Tufte, Yanling Yu, and Mahshid Lotfi
The Consumers United for Evidence-Based Healthcare (CUE) Summit was held at the New York Academy of Medicine, on March 19, 2017. Three of us from the CERTAIN Patient Advisory Network were honored to have had the opportunity to attend this year. Yanling Yu, representing Washington Advocates for Patient Safety, Janice Tufte from Muslims for Evidence Based Healthcare, and Mahshid Lotfi, a Patient Advisor with CERTAIN at the University of Washington, were all actively engaged during the summit, inquiring minds asking pertinent questions to the speakers addressing our concerns.
The main goal of CUE is to strengthen the voice of consumers and provide leadership in healthcare research implementation through guideline development, advisory groups, conferences, and panels. Its mission is to promote the health of populations and the quality of individual health care by empowering consumers, public health policy makers, and health care providers to make informed decisions based on the best current evidence through research, education, and advocacy. The 2017 CUE Summit’s theme was “Leveraging the Power of Patient & Consumer Advocacy to Transform Healthcare.” The Summit was sponsored by Agency for Health Care Research and Quality AHRQ and Patient Centered Outcomes Research Institute PCORI.
There were a number of exceptional speakers on panels and in keynote sessions throughout the day. Below is a brief summary of 3 keynotes that particularly resonated with our group:
The Politics of Consumer Advocacy: the Promise and Pitfalls of Disease Constituencies
Speaker: Vinay Prasad, Oregon Health & Science University
In his talk, Dr. Prasad argued that the voice of patients should be the foremost consideration in medical research and care. This he explained, need proper patient representation to allow for a range of voices, a cross-section of all those affected, voices which will reach some commonality or consensus, and perspective that speaks always and only on behalf of patients. Currently however, the system that represents patients does not consistently achieve all these aims. Key patient groups are missing from the conversation – patients who have died or experienced serious adverse events during clinical trials, those in rural or hard-to-reach areas, and those who don’t typically participate in research in the first place. The speaker emphasized the importance of always guarding patients’ interests, and provided the statistics that around 36% of 104 patients advocacy organizations reported to have at least one drug, device or biotechnology company executive on their governing boards, a situation that may not prove to be in the full interest of patients.
How PCORI “Priority Populations” are Engaging in Research Implementation
Speaker: Sanford Jeames, Huston-Tillotson University
PCORI was established, in part, to assist patients, providers, purchasers, and policy makers in making informed health decisions by advancing the quality and relevance of evidence and disseminating research findings. PCORI aims to assist patients, clinicians, purchasers and policy makers to make informed health decisions through advancing the quality and relevance of evidence, and to disseminate research findings in respect to health outcomes and effectiveness and appropriateness of medical treatments. PCORI began funding research in 2012 (created in the Affordable Care Act in 2010), to ensure patient-centered outcomes research and comparative effectiveness research. . Since then, PCORI has engaged priority populations on advisory boards, and in workshops, webinars, and other formats to share their views. PCORI will continue gauging the effects of patient and other stakeholder engagement in all points of the research process and look for innovative ways to improve research outcomes through engagement.
If It Works in the UK Will It Work in the US?
Speaker: Sally Crowe, Crowe Associates Ltd
Ms. Crowe gave an overview of the continuum of engagement, which she described in 5 levels:
Level 1: here is what we are doing (informing)
Level 2: what do you think about what we are doing? (consulting)
Level 3: please get involved in what we are doing, and we still support you (engaging)
Level 4: what do you think we should be doing? OK let’s do it together, and we will support you (involving)
Level 5: you do what is important and needed, and we will support you (empowering)
To support patients and the public, one needs to consider training and development, practical support and payment, peer support and networking and may be even emotional and psychological support. Drawing on lessons learned in the UK, Ms. Crowe offered pearls of wisdom:
- Work with a diversity of people
- Honor people’s priorities
- Check your power as a researcher
- Incorporate evaluation
- Invest in building relationships
- Work in partnership with clear roles and mutual respect
- Adopt principles and values that underpin your work
- Acknowledge and manage the policies and the power that play a part in decision making
- Never lose sight of the purpose
- Resist certainty
- Stay in the difficult places
- Listen to and work with those you disagree with
In answering the question, “are things changing?” the speaker was affirmative, pointing out several changes in the way we think and talk about engagement, an important one being changing the mindset from centrally controlled to citizen-driven.
In addition to these and other keynotes, there were many panel sessions on several critical issues. Every speaker of the day emphasized that improving performance in any field depends on sharing a common goal and cautioned everyone of conflicting goals of stakeholders that may lead to divergent approaches, thereby slowing progress.
Our Seattle-based CERTAIN Patient Advocacy Network contingency were riveted with interest during all of the presentations, where we often had more questions than we hoped could be answered. The subjects raised by a number of speakers at the CUE summit brought to our attention and kept us talking amongst ourselves throughout the day.
If you represent a consumer advocacy organization and are interested in being engaged with evidence-based healthcare opportunities, please visit this page: http://consumersunited.org/opportunities-for-consumer-engagement
Special Thanks to Reva Datar who organized the CUE summit and is our go-to person with our consumer questions year around. Thanks also goes to CUE for supporting our travels to the summit.