From: Savvy Cooperative
One of my passions is engaging people with ME in research, and especially as more than just subjects of the research. That’s why I co-authored a report on best practices in patient engagement. As the NIH-funded Collaborative Research Centers kick things off, they will be revving up their own engagement with patient partners. To that end, I offer these examples of how not to do patient engagement (via Twitter). For those who want to dig deeper, here are a few articles to consider:
Patient Engagement: You’re Doing It Wrong
Patient engagement is a verb, not a noun
Principles for Authentic Engagement
Make all the decisions for your project, invite #pts to look at what you’ve done for ‘feedback’ at the end. #HowNotToDoPtEngagement
— couragesings (@couragesings) February 16, 2018
Fail to include in your budget the costs for #pt engagement.
Then say you can’t do #pt engagement b/c there’s no budget available.#HowNotToDoPtEngagement
— couragesings (@couragesings) February 17, 2018
Have an organizational #PatientEngagement committee that doesn't include any patients or family caregivers. #HowNotToDoPtEngagement
— Dr. Jennifer Baumbusch (she/her) (@GERONursing) February 18, 2018
“I know about patient experience. I’m a doctor and I see patients all day.” #HowNotToDoPtEngagement So, I guess I know all about doctor experience because I see y’all all day?
— Amanda Crowell Itliong (@MIShouldTalk) February 19, 2018
Ask for feedback a couple days before something is due. #HowNotToDoPtEngagement
— couragesings (@couragesings) February 16, 2018
Compensate patients? We don’t have a budget for that.
(When you don’t compensate, only the individuals who have the time, means, transportation, childcare, eldercare, etc, will engage. Compensate fairly to include all.)
#HowNotToDoPtEngagement— Enlightening Results 💡 (@GraceCordovano) February 18, 2018
Include only 1 patient (to check off the box).
— Enlightening Results 💡 (@GraceCordovano) February 18, 2018
Know there isn’t a cookie cutter formula for engaging #pts. Always ask your #pt partners what works best for them. #HowNotToDoPtEngagement
— couragesings (@couragesings) February 19, 2018
Don’t post opportunities for engagement openly (like it’s a secret society). Ensure only people who “know someone” get involved or recommended.
— Enlightening Results 💡 (@GraceCordovano) February 18, 2018
#HowNotToDoPtEngagement:
1. Meet with an advocate to discuss ideas and strategies on engaging patients, specifically for the CRC grant application, and request that advocate join your advisory council and assist with a pilot project.
2. Ignore suggestions made by advocate to make the pilot project more comprehensive.
3. Invite advocate to one Research Advisory Council meeting, introduce her and explain her role as a pt and advocate.
4. Due to an abrupt change in life circumstances, advocate explains that she must move out of state, but can continue to participate via conference calls, emails, and when necessary travel to site. Researcher gives her a warm embrace and tell her she will be included in further pt engagement activities including advisory council meetings.
5. Ignore correspondence from advocate, provide no invitation to quarterly advisory meetings, and make it clear that it was all just lip service. The Researcher did not get the CRC grant, so perhaps there is no further motivation to engage.
I am enrolled in two research studies currently, and will be asking the PI’s what specific pt engagement strategies they have in action. Clearly actions speak louder than words.
That’s appalling, and also not surprising. Our field lags behind the vanguard of patient engagement.
The format of this post took me awhile to figure out (extract the messages) as I am not familiar with Twitter. Once I did figure it out, I found it very interesting, a clever way to present the information and somewhat (okay a lot) alarming but all too true. I am feeling like a “check the box” rather than being truly engaged “views considered” in a project I am involved with. Thanks, as always, for the food for thought and also for the dig deeper articles.
Jennie Spotila, thanks a lot for the article post.Much thanks again. Fantastic.
Jennie Spotila, thank you ever so for you post.Much thanks again.
Sorry I’m kind of late to the conversation. I love the idea of patient engagement. And then I remember the PACE studies, and that one of the many objections to it is the interaction the researchers had with the subject, how that could have swayed the outcome. Of course I’m aware of many more troubling aspects of PACE and on the band-wagon of wanting to to be retracted, but how do we have both patient engagement in research and not the kind of mid-test pandering we object to in that instance? How do we not fall into serious concerns about objections to outcomes if we are both being studied and part of a study?
Great questions Carollynn. I think I can contribute some helpful information.
First, the objection to PACE you refer to is not that the researchers pandered to patients midstream. The objection is that the study was not blinded, and then was contaminated when all the subjects received a newsletter telling them that the PACE treatments were known to be effective. That’s not patient engagement in the research. There was no two-way street there. That was the researchers potentially influencing their own data.
Second, there is an important distinction between patients as research subjects versus patients as research partners. In fact, the Patient Centered Outcomes Research Institute (PCORI) expressly uses those two terms: subjects versus partners. A patient who acts as a partner should NOT also be a subject. Those are two distinct roles. If I participate as a partner and provide input into study design, I should not then enroll as a subject of the study. FDA already makes this distinction in its patient representative program. I have to disclose if I am a participant in any clinical trial prior to being involved in any advisory committee work.
Third, you asked about the close relationships we have with researchers and each other. Confidentiality is paramount. I can’t disclose things about research design before the researchers do. And study participants should be careful about disclosing their experiences. This is not as big a problem in a study like the NIH study since it is not testing treatment. And of course one of the reasons why studies should be double-blinded (meaning neither subjects nor researchers know who is getting a treatment) is to avoid contamination through disclosure of information.