I had the chance to listen to a live webcast of the PCORI Annual Meeting recently and was impressed about what they are doing and their thoughts about where they want to focus their energy in the future.
The Patient Centered Outcomes Research Institute (PCORI) is a non-profit organization that funds comparative clinical effectiveness research focusing on patient-centered outcomes. Their mission statement is:
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.
The Annual Meeting took place over several days and included a number of excellent speakers. You can read
There were over 200 patients and representatives from patient organizations present at the meeting, and many participated in panel discussions or breakout sessions.
Some takeaways from the webcast were:
- Patients need to be included in every phase of research, from concept (topic selection) to proposal to design, dissemination and evaluation of results
- While typical research answers whether A is better than B and is done with the smallest possible trial based on sample size estimation, patient-centered outcomes research needs big trials that address differences that matter to patients, differences in context (socio-economic, for instance) and trials that are multi-centered and international.
- To get to big trials, researchers need to collaborate instead of compete. PCORI made engagement fundamental; it needs to now make collaboration necessary and essential.
- Patients are not waiting quietly any more. They are seeking answers. To illustrate this, a speaker quoted one of her patients as saying, “You say there is a 3% chance of this happening, but if it happens to me, it’s 100%”
- If a patient’s treatment is not aligned with their personal life, then it is not meaningful.
- Dissemination is so very critical to this research. The results need to be disseminated to the right people quickly.
- After dissemination of results, guidelines and regulatory change is needed to effect clinical change.
- Changing practice takes time. Patients have to be disruptive to get change initiated. Tara Montgomery, Senior Director of Health Impact at Consumer Reports put up an excellent slide showing 5 questions that patients should ask their doctor about screenings or treatments:
- Do I really need this test?
- What are the risks involved?
- Are there simpler, safer options?
- What happens if I don’t do anything?
- How much will this cost and will my insurance pay?
Sharon Levine, MD, Pediatrician at Permanente Medical Group of Northern California and member of the PCORI Board of Governors, spoke of 3 gaps that need to be closed in integrating decision support into the workplace:
- Knowledge gap
- Knowing gap – dissemination of knowledge
- Knowing/doing gap – need to understand how we structure incentive programs and need to measure what people are doing and use these measures for performance improvement
Dr. Levine also stated that there is a definite need to better explain probability and uncertainty to patients.
The thread running through this meeting was that change is difficult, and in order to effect change in clinical practice, there is a great need for patients to be involved in every stage of research and for the research to be disseminated effectively so that it can be acted upon in a timely manner.