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The Imperative to Develop the Participatory Patient - SPM Blog
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We Have Failed

The Society for Participatory Medicine was founded in 2009 to transform the culture of care.  A few years later, a comprehensive history of the forces that resulted in the creation of the Society was presented here by Millenson: Spock, feminists, and the fight for participatory medicine: a history,” and our parallels with the women’s movement have often been cited here. A PubMed search for “Participatory Medicine” lists 5,659 hits (as of June 5,) starting with the 1973 publication Participatory management in psychiatry, whose abstract beautifully notes “the basic conflicts between participatory management and authority, responsibility, and conflicting value systems.”

With all of this effort, we are reminded by our Australian ally Dr Victoria Palmer in our own Journal of Participatory Medicine that we have yet to develop a “science of participation.”  We have also failed to make the participatory patient a significant component for the patient population.

The need for tools to achieve the PEP transformation (bringing the patient from Passive to Engaged to Participatory) logically rises as an imperative. First, a “science of participation” will require an objective, reproducible process for PEP transformation, even while recognizing that no two patients are identical. Second, healthcare will need large numbers of participatory patients to help the value-based healthcare ecosystem (VBHE) succeed.

I propose that the tools needed to carry out this transformation lie at our feet, we have failed to pick them up, and we must. These are the tools of Digital Medicine.

The issues have been clear – for nearly a half century – and SPM has been at it for fourteen years. But we have failed to get anywhere, and I suggest we should want to know why. We need to make the Participatory Medicine Manifesto a reality, and it won’t happen by itself.

Question: Why Have We Failed?

Answer: The current transactional nature of American healthcare (the patient comes in, the physician does something, the patient gets billed) has conspired to result in the failure.  No reasonable ROI-focused healthcare administrator would opt for an innovation that would reduce RVU production [i.e. reduce billings], even if there were a significant quality improvement.  “You can’t pay the bills with diminished RVU production” has been said more than once.

SPM co-founder and former board member e-Patient Dave wrote years ago that it boils down to this: US healthcare is too big to let itself shrink (in 2009!) and has become a malignant tumor that can’t stop killing its host (eight years later, and continuing today.)

What is the path forward, if the system and its money managers are obligated to focus on their own cash, while providers and patients alike are straining to get the job done? As Dave said in “1000 points of pain,”

“… our fastest access to better solutions is to take matters into our own hands … and create new tools of our own.”

The Bright Horizon of a Value-based Healthcare Ecosystem

The promise of participatory medicine has always been to help healthcare achieve its potential. The now widely known healthcare value proposition defines value as directly proportional to outcomes and inversely proportional to cost.  We like to extend “outcomes” to optimizing for all these, not just institutions’ money:

  1. the patient
  2. social determinants of health (SDoH)
  3. provider culture
  4. quality Management
  5. healthcare delivery.

Optimizing “The Patient” requires that the patient be participatory – engaged and empowered.  And participation itself goes a long way to optimize quality, SDoH, cost and delivery.

Oh, you say, but I doubt the VBHE will come to pass. In fact, there are powerful signals that it will. CMS  (here and here), Humana (in its Medicare Advantage business) and Deloitte strongly advise that VBHE is coming. To top it off, just a few months ago the American Journal of Managed Care reported that fixed-rate reimbursement is a viable cost reducing strategy.

Reading between the lines: healthcare enterprises better be ready. 

And that’s the message from Dr. Thomas Feely in the title of his NEJM Catalyst piece: Covid-19 Hasn’t Been a Tipping Point for Value-Based Care, but It Should Be.

This is all good news for our movement, but we must act on it to seize the moment. As members of SPM we know intuitively that the participatory patient has better outcomes and costs less to care for.

There are studies to support this – but they lack in scope and uniformity in just what a participatory patient is, how they get to be called that, and most importantly, how to make more of them. The work of Judith Hibbard on patient activation comes to mind, but it’s possible to rank high on her Patient Activation Measure and still be passive and compliant, not empowered and autonomous.

As my Pubmed search implies, there are plenty of others – we just need to be able to demonstrate the data derived from well controlled studies with components that are identical, avoiding the meta-analysis.  The cost savings and quality improvement intrinsic to the participatory patient makes now the time. The ball is in our court.

A Call to Action

Prior to Y2K (Web 2.0, the “read-write Web”) the path to developing the participatory patient was arduous with significant time and resource investment, to move knowledge and data around.  Over the intervening 21 years, the story has changed considerably.

  • Interactive mobile apps can teach in bites that work for the patient.
  • Remote patient monitoring can bring data previously unavailable to the EMR.
  • Videoconferenced visits can engage the patient with their convenience and help with provider productivity all at the same time.
  • Curated web sources can lead patients to posit diagnoses, which is a powerful engagement exercise. This in addition to symptom checker sites.
  • Texting brings the speed of light to clinical interactions.
  • Not too far off is the natural language / AI processed encounter record in both the patient’s and provider’s voice.

Now is the time use these tools in a designed, scripted process that systematically and reproducibly yields a standardized participatory patient.  This will be a platform that is scalable and observable.

The result will be the PEP-transformed patient with better outcomes and less cost. The patient wins, the society wins, and the provider community wins.

After 40 years of doctoring in the Emergency and Urgent Care space, Halpren-Ruder spent a year at Jefferson University studying aspects of Digital Health (going from the reactive to the proactive in healthcare). Examining the healthcare value proposition, he came to focus on the patient as a resource and therefore the participatory patient; and see digital health as a powerful, cost effective tool to enable patient participation.

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