Amy Price: The evidence informed patient

amy_price2The journey
My work in international relief as a psychologist and cognitive rehabilitative consultant did not prepare me to be a trauma patient with brain damage. The injuries showed me we patients need to be full partners in our own healthcare and that we need a bridge. That bridge is evidence and the vehicle through which it travels is relationship and shared knowledge. To build this bridge I reinvented my destiny and trained in evidence based healthcare at the University of Oxford, where I am presently pursuing a doctorate.

The better way
Patients are medicine’s most underused asset. Evidence combined with the patient voice can lead to innovation and solutions when evidence meets common needs and is shared with mutual respect and dignity. Patients can offer insights into what happens between the research lab and the medical clinic. Even very sick patients only see the doctor for a few hours out of every year. The rest of the time they self-manage with the tools they are given to work with.

Patients are a wealth of untapped information since they know why something does or doesn’t work and when it is not used in the time between doctor visits. Getting patients to a conference where medical standards are revisited, and new ideas are presented and discussed, is a win-win partnership.

Next step: EBM conferences involving patients
I attended Evidence Live 2016 at Oxford University, UK. I hoped that patients would gain insights to change their worlds. Medical leaders might see how their work changed patient lives, and discouraged professionals could see by interacting with patients that what they were doing mattered more than they knew. I envisioned doctors, researchers, and patients collaborating on new innovations. It did not happen.

Patients paid daily rates and then could only attend for that day as full conference fees or accommodation costs were out of reach. Workshops had attendees pretend to be patients since there were none. Patients as keynote speakers, abstract presenters, or workshop leaders were notably absent. Health professionals did not bring patient team members. The Next Generation of Leaders was without patient representation. I asked in a main session how patients could benefit conferences. I was told that was a hard question. Others, whose careers depend on patients to make statements, promised to get back to me but they did not.

Evidence Live and The BMJ affirm they want to involve patients as conference partners. They have not done it. In the spirit of collaboration and progress, I share some ideas to start the process.

How to involve patients as conference collaborators
Conferences are special events where we come together to build influence and to deliver maximum impact. Patients are part of the master toolkit. Successful patient involvement grows where conference leaders choose to own it and feed it. There is no magic formula for involving patients: it takes strong relationships, work, and commitment.

You need to plan early—invite patients to work on the steering committee. Hold competitions for best patient reviewer. They can review abstracts alongside other reviewers. Ask patients to be keynote speakers or workshop leaders. Give conference attendance as prizes for best patient poster, infographic, blog article, and social media pre-conference chat. Present awards for best researcher/patient team and top patient inspired innovation. When patients work in groups, award recognition to all contributors.

Have patients be active in the roundtable discussions and as full partners in debates. Have experts and patients team up to share consultant time at assigned tables where researchers can go for one to one help to make their projects better and to find out how to include patients. Hold a themed lunch where attendees can problem solve at each table, facilitated by an expert in the subject and a patient. Share the results of each table at the conference—write a paper. Involve patients who were attendees in the debriefing for your next conference.

Real evidence considers patient preferences and values. How can we consider voices we make no room to hear? Patients can teach others to be informed, shared decision makers and responsible agents of their own healthcare. Make evidence based medicine great again, and let patients help.

Amy Price worked as a neurocognitive rehabilitation consultant and in international missions before sustaining serious injury and years of rehabilitation. She emerged with a goal to build a bridge between research methodology and public engagement where the public is trained and empowered to be equal partners in health research. She is a BMJ research fellow, serves on the BMJ Patient Panel, and is reading for a DPhil in evidence based healthcare at the University of Oxford.

Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: None.

Related articles:
Editorial: Co-creating health—more than a dream
Analysis: “Nothing about us without us”—patient partnership in medical conferences
Blog: Patient involvement in the European Respiratory Society Congress 2015-16
Blog: Effective involvement of patients at medical meetings—a case study from EULAR

  • Dr. Amy Price

    Great points as best available evidence really includes values and judgements. I like your reference to to the parallels in Mindlines http://implementationscience.b
    I agree working from what people already use can be a bridge for more informed shared decision making by all and a common ground from which to start, Thanks for this insightful response

  • An excellent (yet really maddening) essay, Amy. Thanks so much for sharing your unfortunate experience at Evidence Live 2016. I’ve been to both kinds of medical conferences as an invited patient participant (bona fide ‘Patients Included’ events as well as the wannabe ones that just want to tick the box marked “Patients Included” on some organizer’s To Do list). We could sure tell the difference from start to finish. As I told a fellow patient a few years ago, “I can no longer afford to be honoured by any more health care conference invitations”.

    We can now tell well in advance which is which before accepting a tokenistic invitation by asking conference organizers if they’ve been accredited as a “Patients Included” event by complying with (ouch! there’s that dreaded C-word that most of us patients cringe at when it’s aimed at us!) the five criteria set out at https://patientsincluded.org/conferences/