I am launching www.patientpartnering.net, my new patient voice blog.
As many of you know, I have had one marrow cancer for about four years, and this, together with the excellent care and patient participation opportunities I have gotten at Johns Hopkins, has led me to become involved in the “patient voice movement” in health care. As I have noted before, there are huge parallels with the “litigant voice” issue in the legal system, with which we are all engaged, one way and another.
So, I am now launching a parallel blog to accesstojustice.net, specifically patientpartnering.net. You can join this patient partnering blog by putting your email in the box in the left column.
I describe the philosophy of the new blog as follows:
What I mean by [the phrase] 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.
This listing of the most recent posts in that new blog should give a strong sense of how much the two topic areas are related (or rather should be), and how much we would all gain from cross fertilization. Indeed, I would urge ATJ folks to become active in patient councils, which are already in place in over 30% of hospitals.
Recent Patient Partnering Posts
The Great Research News About Impact of An Hallucinogen on Cancer Patient Depression and Anxiety Raises a Side Question About Extent of the Problem and the Diagnostic Process December 1, 2016
The Roots of Patient Partnering Are in Hospice and In Midwifery — And Where Else? November 28, 2016
More Ideas on Research Driven By The Patient Experience November 19, 2016
NQF “Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care” Released November 16, 2016
Perspectives on Research Directions November 14, 2016
Patient First Technology November 13, 2016
An Important Thought on Patient-Partnered Research – Different Environments November 13, 2016
Should There Be a New Medical Role to Fill the Gap Between Specialists and PCPs for Those With Ongoing Serious Illness? November 13, 2016
As always, I welcome comments and contributions to both blogs.