{"id":3746,"date":"2009-11-09T11:00:33","date_gmt":"2009-11-09T16:00:33","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=3746"},"modified":"2010-01-04T16:15:55","modified_gmt":"2010-01-04T21:15:55","slug":"why-participatory-medicine","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2009\/11\/why-participatory-medicine.html","title":{"rendered":"Why Participatory Medicine?"},"content":{"rendered":"

For most people, their impetus to be actively engaged in healthcare comes from an experience with serious illness\u2014either their own or a loved one\u2019s. My journey into participatory medicine began during my internal medicine residency at Boston City Hospital<\/a>, a public urban hospital, in the late 1980s.\u00a0 While there, I had a number of realizations that led to my passion for participatory medicine.<\/p>\n

The first was that educating patients and communicating with them effectively pays big dividends in improved health behaviors and outcomes<\/strong>.\u00a0 It is the most cost effective intervention we can offer.\u00a0 Moreover, this only happens in an environment of\u00a0 mutual respect.\u00a0 In almost every patient, there is something to be treasured and respected.\u00a0 Hopefully, they feel the same about us.<\/p>\n

Next I realized that so much of what we do in healthcare is information management<\/strong>.\u00a0 An extraordinary effort is invested into locating, organizing, recording, and regurgitating information that is used in patient care. \u00a0More on this later.<\/p>\n

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Finally, patients only see us (the healthcare system) for a small fraction of their lives.\u00a0 The rest of their time they are home (or in the case of many of my patients in those days, in shelters and on the streets).\u00a0 Therefore, no matter what we do in the office or in the hospital, it all falls apart if healthy behaviors don\u2019t persist.<\/p>\n

Because of my interest in information technology, I felt that I should cultivate that interest to hopefully improve the way we manage patients.\u00a0 I pursued a fellowship in clinical computing, often called medical informatics.\u00a0 I was fortunate to do this at Beth Israel Hospital (now Beth Israel Deaconess Medical Center)<\/a> and Harvard Medical School<\/a> in Boston.<\/p>\n

Beth Israel was one of the first hospitals (since the 1970s) to use e-mail extensively for internal communication (I was there prior to the widespread use of e-mail).\u00a0 As part of my work developing and implementing clinical systems, I wanted to improve the process of coordinating care for patients to prepare them for discharge from the hospital. E-mail seemed to be an important communication tool in the hospital, and I suspected that it was mainly used for communication about patients.\u00a0 My mentor doubted that, suspecting that it was mainly used for administrative and social messaging. I subsequently did a study that revealed that a plurality of hospital e-mail use did in fact concern patients.<\/strong><\/p>\n

As part of my role at Beth Israel, I saw patients in a primary care practice.\u00a0 At about the time I started building my practice in the early 1990s, Beth Israel had entered into a joint venture with a health plan, so it could provide low-cost health insurance to its employees.\u00a0 The plan was obviously very popular, but it required that its members see physicians that were part of the hospital network.\u00a0 Since I was accepting new patients, many employees became my patients.<\/p>\n

Because they were employees who were accustomed to using e-mail, it was very natural to communicate with these patients using e-mail.\u00a0 By the time we connected the hospital e-mail system to the internet outside the hospital, I was already becoming comfortable with its use in clinical care.\u00a0 Moreover, I found that when used appropriately it reduced communication barriers<\/strong> with patients and augmented our relationships<\/strong>.<\/p>\n

\"Email<\/a>Over time, I developed best practices for its use, and in 1998 I co-authored the first national guidelines for the use of e-mail in clinical care<\/a><\/strong> for the American Medical Informatics Association<\/a>, and later augmented these<\/a> with community input for the Massachusetts Health Data Consortium<\/a>.<\/p>\n

One of my teachers at Beth Israel was Warner Slack<\/a>.\u00a0 In the 1960s, Warner was developing program that were among the first interactive computer-based interviews for patients, which asked patients questions and later attempted to diagnose simple medical problems.\u00a0 He later wrote that patients were the most valuable but underutilized sources of information in healthcare<\/strong>.\u00a0 This profound bit of wisdom, still being quoted 40 years later, stuck with me.\u00a0 Warner encouraged me to pursue my patient-centered work.<\/p>\n

Warner introduced me to Tom Ferguson<\/a>, the pioneer of consumer health informatics, and we became fast friends.\u00a0 I was eventually drawn into a close-knit circle of Tom\u2019s apostles that became known as the e-Patient Scholars Working Group.\u00a0 In 2009\u2014three years after Tom\u2019s death\u2014 we went on to organize the Society for Participatory Medicine<\/a> to realize Tom\u2019s vision.<\/p>\n

At Beth Israel I also worked with Charlie Safran, David Rind, and others to develop the OMR, an online medical record<\/a> for use by providers.\u00a0 We put computer terminals (later computers) in all examination rooms.\u00a0 I found that using the OMR during patient encounters was most effective when I could turn the monitor to share their records<\/strong> with them.\u00a0 This had the immediate effect of demystifying the record and the patient\u2019s own health information.\u00a0 Together, my patients and I were able to review the impact of lifestyle changes<\/strong>\u2014both good and bad\u2014 and medical interventions on their physiologic parameters.\u00a0 This information was empowering<\/strong> to my patients.<\/p>\n

After we linked these exam room computers to the Web, I developed our first clinical portal to organize the wealth of web-based resources for physicians.\u00a0 From its very first iteration it included a section containing patient educational resources for two reasons.<\/p>\n