Over the past several months, SPM’s board has engaged in a planning effort, as it approaches the fifteenth anniversary of its creation. Our goal is to assess the state of the Participatory Medicine movement and discern where SPM could have its greatest impact in changing the culture of health care so that “patients shift from being mere passengers to responsible drivers of their health, and health care professionals encourage and value them as full partners.”  After meeting with dozens of internal and external stakeholders – including many of you – we have conceived an exciting initiative.

Our goal is to create a Participatory Medicine Index that will be able to measure progress toward achieving Participatory Medicine. We plan to develop three separate indexes that will measure patient/caregiver, clinician, and health system progress toward the integration of Participatory Medicine principles into their actions and behaviors. The indexes will be developed sequentially, starting with the patient/caregiver index, then adding the clinician index, followed by the health system index. We envision an annual consistent measurement to allow tracking progress toward Participatory Medicine ideals. We also want to use sample sizes that will support segmenting results regarding such issues as health equity, differences by clinical specialty, use of health technology, and geography. 

The value delivered by this approach will be that all stakeholders will understand their own participatory behavior against ideals and relative to others to improve Participatory Medicine practices. Each index will ask participants to reflect on their own participatory medicine behavior and practices as well as that of other stakeholders. Progress will be measured regularly to drive awareness, education, and change.

Our review of the state of Participatory Medicine identified notable gaps in current approaches to measuring the performance of health care delivery today that the Participatory Medicine Index can fill. Many existing measures look at patient satisfaction and engagement but focus on transactional aspects of care (e.g., did you wait an acceptable length of time for an appointment?), on patient adherence (e.g., did you understand how to take your medication?) or on gaining market share (e.g., how likely are you to recommend us?). 

While those measures are often important, they are not sufficient. They don’t measure the mutually collaborative relationship that should exist between clinician and patient. There are almost no measures of clinician partnership with patients and patient partnership with clinicians. We also found that the institutional context that can support effective patient/clinician partnership is also under measured.

We’ve shared this concept with a number of thought leaders and experts among our membership and outside SPM. Their reactions have been overwhelmingly positive and supportive. We understand that developing and implementing this initiative will be challenging. We believe we have tested the concept enough to share our thinking with you and look forward to collaborating with more SPM members to formulate and test the index. 

There is an old adage that you can’t improve what you don’t measure. We think it’s high time that there are measures of Participatory Medicine through which we can build awareness, educate, and inspire adoption of it. We know that the application of Participatory Medicine principles improve care quality, cost, outcomes and satisfaction for both patient and clinician. That is our core intent. 

The Society has a big job ahead. We know we can do it with your help.  We look forward to your thoughts and ideas about this initiative as well as your participation in development of the indexes. Please contact me at pmindex@participatorymedicine.org to join us in this critical work.