Moving from Patient to Partner
Over the last few months, I’ve had the good fortune of participating in a number of meetings with doctors, nurses and healthcare administrators who are interested in delivering “patient-and-family centered” care and improving the patient experience. As a patient, I am literally giddy when I talk to care providers who want to know how to be better communicate with me, how to involve me in decisions, and what it looks like to treat me as a “whole person”.
What has struck me in all of these interactions is that while there is genuine interest in understanding patient needs and preferences, the conversations and ideas generated have solely focused on how doctors, nurses, and/or the healthcare system need to change. Never once has anyone asked me “what do you think is the patient’s role in improving their experience and the care they receive?” This may sound like an odd question, but I believe that even more important to improving the patient experience than delivering “patient-centered care” is developing true partnerships between patients and their providers. And in partnerships, there is shared responsibility, though different roles, for achieving the outcome.
During my long journey to find a diagnosis and effective treatment for my illness, I not only wanted to be a compliant patient, I wanted my doctors to see and trust me as someone who could provide valuable information that could make their job a little easier. At first, I wasn’t really sure how to be that “partner”, but I knew I wanted to offer more than taking my meds and showing up for my appointments on time. So, I asked my doctors what could I do. The apparently don’t get ask that question very often, but eventually, we came up with some assignments for me to track symptoms or side effects and research I could do on the internet – not only did these projects help me learn a lot about the conditions I potentially had, they also gave me something productive to do between doctor visits. I felt like I was in a real relationship when after sharing my preferences, my doctors and I would talk how they liked to get information and what was important for them to know. I did my best to honor their needs in the same way they honored mine. I daresay my doctors felt good about our partnership too; on more than one occasion, they told me that I was one of the most knowledgeable and thoughtful patients they had worked with.
At a recent conference, I mentioned to a group of providers during a discussion about measuring patient experience, that in the same way patients are being asked how much effort their providers made to help them understand their health issues and treatment options, providers should turn the tables and ask us patients how much effort we’re making to understand our health and make the right choices for ourselves. Based on the reaction at the table, I would venture to say that no one had considered this idea before, but they were really intrigued by the idea of mutual accountability – and isn’t that what partnership is about?