Participatory Medicine in Oncology

Participatory Medicine in Oncology

Michael A. Thompson, FASCO, MD, PhD

Oct 25, 2011

What does a healthy medicine and oncology “ecosystem” look like?

I attended the 3rd Annual Health Care Social Media Summit hosted by the Mayo Clinic Center for Social Media in collaboration with Ragan Communications (link). Multiple speakers at that conference discussed the changes in health care. It was noted that we have evolved from a Web 1.0 to 4.0 (or Health/Medicine 1.0 to 4.0, Nash, Lasseter):

  • 1.0   Content — Web: original Internet — Med: passive reading about medical information
  • 2.0   Communities — Web: interactive sites — Med: downloading articles and interacting with medical professionals
  • 3.0   Commerce and data-driven applications — Web/Med: mobile health technologies (mHealth)
  • 4.0   Coherent — Web: social networks — Med: patient-interactive, patient-driven comprehensive social networks

It has been noted that it wasn’t until Web 2.0 that the Web “began to harness the intelligence of its users” (Tim O’Reilly). At the Mayo Social Media conference this week, @ePatientDave (Dave deBronkart, who helped establish the Society for Participatory Medicine link) presented on participatory medicine and the concept of the e-patient. In that scenario the e-patient is Empowered, Engaged, Equipped, and Enabled.

Wikipedia defines participatory medicine as: “…a model of medical care in which the active role of the patient is emphasized. Participatory Medicine has been used at least as early as 2000 to mean one or more of four interrelated ideas:

  • A group of people who suffer from a chronic disease form a community (often an online community, a support group) to share information and mutually support each other.
  • Members of a patient community (or members of a community disproportionately affected by a disease) play important roles in community health decision-making. [1]
  • Patients play a role as part of collaborative 'treatment teams' addressing their diseases. [2]
  • A patient is 'mindfully' involved in treatment, by making behavioral changes, meditating, or similar acts. [3]"

The Society for Participatory Medicine's definition is: “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

Patient questions may be answered by sites such as Avvo, HealthTap, or others. It is not entirely clear that this will solve individual oncology practice communication issues. It is possible that some integrated electronic medical (or health) records (EMR/EHR) implementations could provide one iterative approach to interactivity. Patient online forums may be powerful ways to disseminate information (e.g., The SCAD Ladies - Where Patient Empowerment Meets Rare Diseases) but can be full of erroneous and potentially dangerous advice. Additionally, despite some specific success stories, not all “average” individuals may be maximally benefiting from Med 4.0 type patient or patient-physician social media networks. Patients such as “@ePatientDave” may be more on the directed/autonomous end of the patient continuum compared to the other end with the patient asking for paternalistic physician guidance.

Some limitations of physician interaction in such Med 4.0 social media networks may include:

  • Time — MD mainly, but also patient
  • Regulatory barriers
  • Billing
  • Scheduling (when to interact in a busy schedule?)

Will an accountable care organization (ACO) health care model fix this? Insurance driven solutions? Patient advocacy? Online patient forums?

What do you think?


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Claire Johnston

Nov, 03 2011 3:42 PM

That's an interesting spreadsheet, Mike. I wonder if we could add a "Association Affiliation" column in there?

Michael A. Thompson, FASCO, MD, PhD

Nov, 09 2011 4:04 PM

@Claire -
Good thought. Though since I didn't start or "own" the spreadsheet, I'll leave that up to others.

Michael A. Thompson, FASCO, MD, PhD

Mar, 12 2012 5:02 PM

Here is another list. 

From Tweet...

@EndoGoddess Twitter Doctors, a directory of the most influential doctors on Twitter, updated hourly:

Robert E. Fisher, MD

Feb, 18 2013 12:36 PM

      The concept of four levels of development of social media is illustrative in this post.  However, I think that some sites may fit into more than one category.
      Here's an example:  The Pink Ribbon Survivors Network ( brought together cancer professionals and patient advocates to build three online resource libraries devoted to breast cancer survivorship issues: an online library for patients, an online library for primary health care providers to learn of long term medical and psychosocial issues pertaining to breast cancer survivorship, and an online library that synthesizes physician, nursing,and social work literature on breast cancer survivorship issues.  
       I think we will see the internet fuel a lot of creative applications of dissemination of medical information.  Sometimes this will be disease specific, sometimes group specific, sometimes interactive between patients and providers, but sometimes taking advantage of the ability to build disease specific online libraries that will improve medical care and understanding for a segment of survivors as large as breast cancer survivors.
       I wonder what level 5.0 would be as the internet as a tool of social media evolves?
Rob Fisher, MD

Michael A. Thompson, FASCO, MD, PhD

Feb, 18 2013 12:51 PM

Dr. Fisher - Thank you for the comments.
I think it is true that the 1.0->4.0 (5.0) web nomenclature:
1.0   Content — Web: original Internet — Med: passive reading about medical information
2.0   Communities — Web: interactive sites — Med: downloading articles and interacting with medical professionals
3.0   Commerce and data-driven applications — Web/Med: mobile health technologies (mHealth)
4.0   Coherent-Web: social networks — Med: patient-interactive, patient-driven comprehensive social networks a didactic tool has limitations that you point out.
In general I think static sites are moving to more dynamic, interactive, and patient-centric models.
It is highly likely that blended approaches -- as you describe -- will yield appropriate use of various static and dynamic interactions.
Thanks again. Mike

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