{"id":21005,"date":"2018-10-09T08:15:05","date_gmt":"2018-10-09T12:15:05","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=21005"},"modified":"2018-10-10T06:50:00","modified_gmt":"2018-10-10T10:50:00","slug":"dr-patti-brennan-spm2018-speaker-preview-supporting-the-care-between-the-care-the-role-of-the-national-library-of-medicine","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2018\/10\/dr-patti-brennan-spm2018-speaker-preview-supporting-the-care-between-the-care-the-role-of-the-national-library-of-medicine.html","title":{"rendered":"Dr. Patti Brennan – #SPM2018 speaker preview \u201cSupporting the Care Between the Care: The Role of the National Library of Medicine\u201d"},"content":{"rendered":"

[Update: this post has been picked up and cross-posted<\/a> on the widely read The Health Care Blog]<\/p>\n

Here\u2019s the latest in our\u00a0series of posts by and about<\/a>\u00a0the outstanding speakers we\u2019ve lined up for the Society for Participatory Medicine\u2019s second annual conference on\u00a0Oct. 17\u00a0in Boston, attached to the prestigious Connected Health conference.\u00a0Register here<\/a>. (Our\u00a0#SPM2018 blog series<\/a>\u00a0has more about the speakers and activities.)<\/em><\/p>\n

Since my earliest days in this work – even before our Society was formed – Dr. Patricia Flatley Brennan RN, PhD, FAAN, FACMI (or “Patti,” as she’s known to her many friends and fans) has been one of the most optimistic voices. She’s always been a dedicated, enlightened researcher, academic (at the University of Wisconsin, Madison) and voice of patient participation. On top of that, she was the director of the Robert Wood Johnson Foundation’s\u00a0terrific\u00a0Project HealthDesign: Rethinking the Power and Potential of Personal Health Records<\/a>, which ran from 2006-2014, an absolutely pivotal period in the onset of personal health data. Patti knows that knowledge is power, and that patient power is naturally optimized when patient knowledge is optimized.<\/p>\n

So you can imagine how thrilled I was when, in 2016, she was appointed the next Director of America’s National Library of Medicine (NLM). In addition to being extremely participatory, perhaps it’s no coincidence that she’s the first woman and the first nurse in the post.<\/p>\n

In a moment I’ll say more about the history of this position, and its significance in the timeline that led to SPM. For now, consider this about her topic at our conference<\/a>, “the care between the care,” particularly the NLM’s role.<\/p>\n

In advocating to improve care, patient voices have often pointed out that the vast majority of the time in our lives, medically, is spent\u00a0not\u00a0<\/em>in the hospital or the doctor’s office. “Doc Tom” Ferguson (1943-2006), progenitor of our society, wrote (back in the 1980s!) about medical self-care, whose impact depends on our skills and our knowledge. He published books and magazines on the subject, and in 1994 was medical editor of the\u00a0Millennium Edition Whole Earth Catalog\u00a0<\/em>(the year browsers arrive), and just 18 months later published the book\u00a0Health Online.<\/em><\/p>\n

Just months before Health Online\u00a0<\/em>was published,\u00a0Patti’s predecessor as NLM Director, Dr. Donald Lindberg, extended the reach of the Library by leading the creation of\u00a0the indispensable literature search site\u00a0PubMed<\/a>, then\u00a0PubMed Central<\/a>.<\/p>\n

The conference where Dr. Brennan will join us is titled\u00a0Democratizing Healthcare.<\/strong> Can you see the beautiful synchronicity in Doc Tom and the NLM concurrently seeding that democratization by spreading both skills and knowledge? In 1994?<\/p>\n

But there’s more to the connection, right there in the e-Patient White Paper (our founding document) (English PDF<\/a>) (Spanish PDF<\/a>):<\/p>\n