The Vision Behind This Blog

The blog is about the idea of Patient Partnered Care.

I am a patient coming up to four years from my MDS diagnosis, and now getting regular blood transfusions, at the wonderful Johns Hopkins, and a member of the Hopkins Oncology PFAC.

As I have become involved in the movement to ensure that the voice of the patient is heard at all levels of the system, I  have started to offer the phrase “Patient-Partnered” to describe what we are trying to do.

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.

Let me give you a very personal example.

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, no one had ever tried to treat it, until my psychiatrist said something like “Lets think outside the box. Let’s try Ritalin.” Within 30 mins 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 the currently used phrase “patient centered” asks what the patient wants and needs, while “patient-partnered” hears the answer that the patients wants to be engaged and useful.

Another example.  before accessing my infusion port (a way to get fluid in you more easily than putting a line in), the nurse asked ” What should I know about your port>” I said, “thanks so much for asking me.”  She replied, “Well, you know far more about your port than I do.”  That then led into a great discussion about why the minimal pain level varied so much, and how that might be further minimized.

Partnership, based on mutual respect.

(Please do add comments about similar examples, if you wish.)

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