LikeLike

And those “real people” organizing professional conferences who are not interested in having real patient voices included will always come up with a rationale to explain the exclusion (like the doc who left an online comment recently saying that he gets to hear the “patient perspective” all day long in practice, so why should he have to sit and listen to more patient stories at his conferences? I’ll be sure to leave a comment on your post, and I encourage my readers here to do so as well. Many thanks…

LikeLike

Thanks for shining a light on this.

I observe the situation from the standpoint of a researcher who is often asked to be the “patient voice” at conferences. I am happy to provide data and insights based on survey research and fieldwork, but I also try to educate conference organizers about how to *really* include the consumer point of view. I wrote a post about how I do that and it’s generating an interesting conversation. I’d love to have you and your readers join in, if you have time:

One objection I’ve heard to including “real people” in professional meetings — whether pharma or medical or other industry — is that it is sometimes not appropriate to include emotion or N=1 storytelling and experiences. I’m not saying I agree, I’m saying that is what I’ve heard.

In those cases I think of — yes — PatientsLikeMe and their emphasis on tracking real people’s experiences with medications and treatments. The company is transparent about their mission and tactics and they use the data they collect to write scientific papers and to win a seat at the table with pharma, clinicians, scientists, etc. I’ve heard various forms of the following quote, attributed to Sir Austin Bradford Hill, pioneer of the randomized clinical trial, and would like to hear what you think of it: “Health statistics represent people with the tears wiped off.”

Other patient- or family-led condition groups who I have heard have wielded power at scientific meetings: cystic fibrosis, Parkinson’s, breast cancer…

So maybe we can begin to talk about a taxonomy of patient engagement. And a taxonomy of organizations who attempt it, with various levels of success or cynicism.

LikeLike

Beware patients: that online patient support group you belong to may very well be the mouthpiece for companies that fund the site. When they start asking you to go to bat for them against publishing secret data that should be published, don’t get sucked in.

LikeLike

LikeLike

LikeLike

LikeLike

The second group contains the patient who may have never felt particularly empowered/interested in things like developing personal health goals (“That’s what my doctors are for!”) but can evolve into engagement precisely because of the way the health care team begins to change the practice of medicine. That’s how I understand the roles of companies like yours that essentially require physician buy-in first by offering some clear financial advantages to the practice (like that quality-outcome documentation that insurance companies are requiring) as well as inherent health benefits to the individual patient.

In both cases, I’d like to see some bona fide numbers based on evidence to avoid the co-opting of patient engagement as the Next Big Thing in health care.

LikeLike

Several talk the talk but few invest in transforming these words into matching actions that make a difference. Whether it’s political will, a matter of resources or a combination, it’s easy to make the distinction by comparing those organizations content with “statistical sample sizes” and those striving for perfection to learn the perspective of “every patient encounter”, making this a concrete measure by which they benchmark themselves internally and externally.

Perfection is really important when you’re entrusted the responsibilty for people’s lives; statistical sampling is simply inadequate for the precision required to ensure “consistent” high quality care. Examining the outcomes of every 100 or so patients rather than emphasizing the importance of each individual encounter contradicts the principles of Total Quality Performance (perfection) which we assume consistent high quality care means, but again is often just another co-opted term.

People (patients) deserve better. Until they are routinely empowered with a voice (Patient-Centered Care, Patient Engagement, Patient Activation, and Patient Empowerment) the opinion that they are getting what they need, prefer, and or are paying for, when they need it, will always be one-sided.

The company I’m involved with, “CarePartners Plus”, the makers of “Wellby”, concentrate on providing practical tools for patients (people) and providers to use to foster new behaviors that help improve outcomes in the office and beyond and in the process help the health care system improve as well.

We specialize in making it feasible to empower, engage, and activate the patient.

Thank you for the opportunity to express my observations about co-opting Patient Engagement. I will continue to follow your columns.

LikeLiked by 1 person

LikeLike

LikeLike