I have now started blogging on issues relating to the patient voice in health care. I am proud and happy that my posts will be appearing on the blog of Parent Family Care Centered Partners.
Here is how the organization describes itself (no prizes for noting the huge resonance with the self-represented litigant movement.)
We are a small organization with a large vision for improving the quality, safety and experience of healthcare through the development of authentic partnerships from the bedside caregiving relationship to the boardroom where programs and policies are established. PFCCpartners is committed to collaborating with patients, families, physicians, healthcare administrators, nurses, therapists, social workers and all those invested in improving health care.
PFCCpartners supports the commitment to collaboration by engaging in Community, Skills Development, Contracted Projects and Patient Family Voice.
PFCCpartners was founded in 2010 in response to a request by the healthcare community in southern California for a resource and support network to establish patient family centered care practice in the region. Founder Libby Hoy, is a Patient Family Advisor with more then 20 years experience in partnering with hospitals, healthcare organizations, national health policy organizations and care teams managing her sons’ chronic illness. The resources and enrichment programs developed for PFCCpartners come from personal experience in the role of PFA for many hospitals and healthcare organizations. Therefore, the core values of PFCCpartners are:
PFCCpartners believes in the value of providing the representative voice of patients, to inform the design of programs, policies and improvement of healthcare systems.
PFCCpartners values our teachable spirit in our efforts to inform healthcare improvement, constantly seeking to knowledge from all of our partnerships so that together we create a learning health system.
PFCCpartners values and embraces the diversity of culture, experience, region and socio economic status of all healthcare stakeholders.
PFCCpartners values authentic, respectful partnerships in which every stakeholder has the opportunity to inform the healthcare system.
PFCCpartners is committed to building authentic partnership opportunities to every patient and family member across healthcare.
Here is my first blog posting on that blog.
Not Just Patient Centered, But Rather Patient-Partnered Care
By Richard Zorza, Patient Family Advisor
As a patient coming up to four years from my MDS 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 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, noone 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 “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 here, has a lot of the same thoughts behind it.
Above all, I hope that this all helps lead to a fruitful sharing of ideas between out movements. I have previously suggested that legal advocates might both learn and contribute by joining local hospital patient and family councils.