October 15, 2019 —By Richard Zorza —
Editor’s Note: Originally posted on the blog of Parent Family Care Centered Partners.
As a patient coming up to four years from my MDS [Myelodysplastic Syndromes] diagnosis, and now getting regular blood transfusions, at the wonderful Johns Hopkins, and as a member of the Hopkins Oncology PFAC, I have been thinking about the right labeling of our movement. (As Libby Hoy and I agreed in a recent phone call, names are important.) I love the phrase “patient-centered,” and think it has been a great way of thinking about changing the focus of the system at every level. But I would like to suggest a modification. The problem for me is that it evokes a picture of multiple providers and caregivers clustered around my bed. Now, that’s much better than having them meeting in another room, with me knowing nothing about it. But somehow in that image, I am still the object of care and healing—very good care and healing and much appreciated care and healing, but still the object on which others focus.
I’d like to offer the phrase “Patient-Partnered.” What I mean by that is that the process includes the patient as a full partner, with our own skill and expertise, as well as direct reportable knowledge. The patient provides information about what they are feeling medically and in terms of how they are being treated, in all senses of the word. They make suggestions about how to improve not only their situation, but that of others. They keep their eyes open and try to see patterns in fellow patients and ask if those may generally be true, or worth researching. They talk to other patients and help build a community that gives feedback. Their input includes everything from their own situation to the overall health care system. In other words, they are partners, not just the beneficiaries of being at the center of care.
The first time I sat down with my current oncologist, Amy DeZern, I related to her how even though exhaustion is recognized in the research as the primary symptom issue for MDS patients, none had ever tried to treat it, until my psychiatrist said something like, “Lets think outside the box. Let’s try Ritalin.” Within 30 minutes of taking the first pill, I was like: “This is what life was like.” Now, of course, it does not really take me back to before, but it’s a lot better, and I would not be going to meetings, and writing this blog if I was not taking it. (Now, most people think of Ritalin for AHDD, but it also works for narcolepsy. I talk a bit more about getting Ritalin here, on my health updates blog.)
Anyway, at the end of the session, I asked Dr. DeZern, “Tell me how I can help you do your job better, and not just for me.” She replied, “You already have.” You can imagine how great that made me feel. Better than a double dose of Ritalin. One way of thinking about all of this is to say that “patient centered” asks what the patient wants and needs, while “patient-partnered” hears the answer that the patients wants to be engaged and useful.
P.S. The wonderful Care Map by Cristin Lind, described in the Huffington Post, has a lot of the same thoughts behind it.