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e-Patient Manifesto: "Patients Included" - SPM Blog
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Martin Luther HammerIn 1517, Martin Luther nailed his “Ninety-Five Theses” to the wooden doors of Wittenberg Cathedral, sparking a global reformation of the Christian faith that’s still going on today. In the 1950s and 1960s Dr. Martin Luther King Jr. worked to drive inclusion for all in a society that had long separated people of different backgrounds. That is also an ongoing reformation.

Parallels can be drawn in the e-patient movement, which is in a position to help drive a global reformation of healthcare. We’re not planning on nailing ninety-five theses to a hospital’s doors, but we are dedicated to the idea that patients deserve to be seen as equal partners by the healthcare industry. Based on a robust conversation among some of our members, we’d like to propose the following as a manifesto on the importance of including patients at healthcare industry conferences that talk about patient care, or patient engagement, or patient [anything].

First, an examination of the role, and the status, of “patient”:

  • It can be a role that comes and goes, and returns, different than before, or similar.
  • It can be part of my identity – something felt and lived strongly, or coexisting quietly. This too, can develop and change.
  • It can be a view others have toward me, whether I share their view or not.
  • It can mean I’m highly dependent on others (I’m anesthetized for surgery) or highly independent (I’m self-managing) or co-dependent (we’re co-managing).
  • Being a patient can be visible or invisible to others depending on what and how I share my experiences, and it can complement or clash with work that I do – or be irrelevant to any work I do.

“Patient” means different things, to different people, at different times. Whatever anyone’s view of being a patient is, we all have one goal: that others on my care team and around me will respect my definition of my status, and seek to understand what it means to me.

The manifesto:

  • Nothing about us without us. If you’re planning a healthcare industry event that is focused on patient engagement, patient-centered design, patient-centered care, patient-centered technology, or touches on patient care in any part of the healthcare setting or system, you have to include patients on your program or be judged “Patients Excluded.”

If you’d like patients on your conference agenda, the Society for Participatory Medicine has a host of experienced experts who can deliver content on a variety of topics from technology development to clinical care to patient-centered design. Add us to your “send” list when you put out a call for program proposals.

Patients Included” is a growing watch-phrase. Be a proponent of truly patient-centered care by including patients whenever policy and/or planning that involves patient care is being developed, or discussed.

Thanks for contributions to this conversation, and this short SPM Patients Included manifesto, go to David Harlow and Dr. Jonathan Wald.


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