Participatory Medicine 

The History of Patient Empowerment

The Patient Empowerment Movement (PEM) came into being in the 1970s, somewhat on the heels of the Women’s Health and empowerment movements. More recently its has been called Participatory Medicine, which more accurately reflects the two sided nature of the process. Patients want to have more of a say in their care, but additionally doctors now understand the benefits of dialogue and collaboration with well informed patients. Even more recently it has been dubbed Health 2.0 and Medicine 2.0. These newest terms allude to the idea that the continual evolution and improvement in medicine and health is a deliberate stage-wise process. 


doctor and a patient woman showing something on tablet pc.jpg

The initial name, Patient Empowerment Movement, reflected at least some connotation of rebellion from the traditional medical construct, wherein the all knowing doctor dictates the plan to the uninformed patient. This nuance of rebellion in the term Patient Empowerment Movement makes some sense, since it’s predecessor the Women’s Health movement was a rebellion-like reaction to over-medicalized birth practices as a part of women’s general oppression. The goal of the women’s health movement was to “ take back” the culture of birthing and make it woman centered as they once believed to be. To learn more about the progress and the pitfalls of the Women’s Health Movement, click HERE


As with all movements, both the Women’s Health Movement and the Patient Empowerment Movement have evolved. Both have become broad based, and many of the principals of each have been defined, studied and validated in the hallowed halls of medicine. Many tenets of both movements have actually become best practices. For example, we now allow women to move freely in labor, but as recently as the early 70s, patients’ movement during labor was greatly restricted. As another example, we now offer all patients a copy of the notes from their medical appointments, whereas in the 1970s, patients were not allowed to see their medical records. 

Defining Patient Empowerment

There is no clear consensus about how to define patient empowerment. (1)

However, elements include the following: 

  • Sharing of decision making between patients and physicians
  • Expectation that doctors will inform patients about their condition and offer choices when applicable 
  • Expectation that patients will learn about their condition so they can take an active role in decision making 

   " Some empirical evidence suggests that active patient participation in health care is associated with better patient outcomes.” (1) 

This should come as no surprise, since people are more likely to follow through with a plan that they themselves helped make. 

Health 2.0 and Medicine 2.0 

Health 2.0 and Medicine 2.0 take all of this to a new level. Placing a version number after health and medicine is a reference to Web 2.0. As you may know, the original world wide web was “ read-only”. When the interactive web came into being, and users could upload to it, it was dubbed Web 2.0. It became bi-directional, just like Medicine 2.0.

Medicine 2.0 is not only participatory medicine, it is internet connected medicine. It is evidence based medicine that uses up to the minute resources. It is medicine with a social component, wherein patients with the same conditions compare notes and troubleshoot in online communities. Having a version number also implies the intention of continual upgrades. For example, there is a movement afoot, akin to the open data movement, wherein all publicly funded research would be shared online, for the benefit of all, to accelerate the production of helpful results. This would definitely be a revolutionary addition to medicine 2.0.

Health 2.0 refers to health that is enhanced by technology enabled data collection and communication. It refers to the value of monitoring and data collection, both for caregivers and patients alike . A great deal of evidence now suggests, “ If it’s measured, it’s managed.” I can think of many situations in clinic where this is true, from weight to blood sugar to episodes of exercise per week. 


Patients who interact with health care services in this way are called “ ePatients” . The “e” stands for electronic, but also for empowered, engaged, and expert. With the widespread use of smartphones and smartphone connected health gadgets like blood pressure cuffs, glucometers and now personal fitness devices like Fitbit and the Apple Watch, it is easier than ever to be an epatient. More important than these devices, though, is the information available on the internet. Most important of all is the attitudes of both patients and doctors about the relationship that needs to take place to truly achieve Health 2.0.

To learn more: 

Journal of Participatory Medicine 

Patient Empowerment Network 

The Society for Participatory Medicine

Wikipedia on epatient Dave 

Wikipedia on epatients 


(1) Patient empowerment in the United States: a critical commentary, Kathleen Johnston Roberts PhD; Article first published online: 25 DEC 2001; DOI: 10.1046/j.1369-6513.1999.00048.x 

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