Patient engagement involves a shift in perspective, rights, and responsibilities. Rich conversations await us as patients and providers alike shift away from the paternalistic past and toward the shared responsibilities of participatory medicine. I’d welcome inquiries about small, medium and large engagements to help make this future a reality in your organization.
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I like good doctors. A lot.
My life was saved by great physicians, nurse practitioners and nurses at a great academic medical center. I’m grateful enough that I agreed to be in a five minute infomercial on their site:
Participatory medicine is not about patients taking over. Far from it – I’m fond of saying that I’d be in sorry shape if I’d had to dream up the high-dosage Interleukin-2 treatment that saved my life.
And that’s not to mention the extraordinary surgeon who, in a 5+hour laparoscopic procedure, extracted my primary tumors (kidney and adrenal) weeks before treatment started.
Or the ortho team that put my femur back together after a big metastasis gave it a pathological fracture. How on earth can someone go into a messed-up broken leg (bone shards and meat) and scoop out every bit of spilled metastasis and then bolt the pieces back together to make a working leg? But here I am, walking evidence.
I also like to see good business practices in healthcare: good customer service, good IT, good working relationships.
When I started learning about healthcare after reading the e-patient white paper, I came to better understand the economic and cultural pressures providers face today. Increasing pressure to see more patients, an explosion of new data to keep up with, insurance clerks who veto a professional’s recommendations, demands to adopt EMRs, and despite the rising cost of care, incessant pressure not to pay providers more.
Patients can help.
Engaged, motivated, well-informed “e-patients” are more involved in their own care, and can often find information that providers don’t have time (or reimbursement) to pursue. As my own primary physician Danny Sands MD, MPH says, “Embrace knowledge symmetry.” I have some experience in how this can unfold, and would welcome the chance to work with your team.
Thank you for sharing your story! I feel as though we are kindred spirits in our efforts to be our own best health care advocate. It saved my daughters life last year (you can read more about her at http://www.NeelysMiracle.com)
I give seminars to seniors about being a Patient Advocate. Thank you for bringing Patient Advocacy to the providers attention in such a compelling manner.
Hi Dave,
I really enjoyed the talk you gave at Grand Rounds here at Mass General. I got a lot out of it, but I did have one big question at the end. When you got the initial diagnosis, you went into research mode in a big way, which is admirable. But I thought, “This guy’s an MIT grad, he’s obviously smart, and he’s got top-notch research and communications skills.” Same thing with the other presenter that day–smart, well educated, organized, great communicator.
My question is this–what about folks who lack those advantages? Do you know if there are resources/recommendations for institutions that want to empower e-patients who might not be self-starters? I just ordered “Laugh, Sing, Eat Like a Pig.” Might find the answers there. Thanks again for the talk!
Dave Ekrem (opinions are my own, of course)
Dave, over the weekend I posted on e-patients.net about a new poster that was shown last week at the ICSI / IHI Colloquium. Safety net populations do benefit from online PHRs.
Included are the poster (PDF) and a short video with the poster’s author.
I debated whether to post it here or there (the Society’s blog) and decided it’s germane to the broader participatory medicine audience.
Hello,
I only just now found this site and read your post. I don’t know if what we do helps your cause but Kinergy Health offers Navigators who become part of the patient’s online community. Their mission is to link the patient to trusted research, facilitate communication with their care team, and keep the patient from having to acquire the skills of a care manager. They are there to help the patient frame the questions, access the answers, prioritize actions and connect their care team. I’d be happy to chat if you thought this model might be of help.
Dear Dave,
I am currently working on a business model for a joint patient record system where physicians and patients contribute data into. One of the many issues of such a model is that doctors don’t have an incentive to share the data they created, even worse, they may deliver evidence to patients who are going to sue them. I really support the idea of empowered patients, but many physicians will see them as professional threat. Of course there will be physicians who support the idea and collaborate with patients, but they will probably stay a minority. So what can we give physicians in return for their data?
Alex
Dear Dave,
I don’t mean to answer wilms question addressed to you, only to speak on this a little from a perspective of a new physician in the field.
I think the precarious nature of the ownership of data is at question when a situation like the sharing and feeling like a practitioner is setting themselves up. One could certainly feel that the evidence of fault may be revealed in free access to the data, but this brings two things into light: 1) could the free access to the data have prevented a poor outcome? In other words, empowering patients to help themselves can most certainly prevent poor outcomes. 2) Though the data (i.e. progress notes, Office notes, etc) are generated from the practitioner and feel like professional or working data, it is written in a patient’s chart. When I am writing a note in a patient’s chart, the assumption is that they will be able to see this note at anytime and most time I speak what I am writing with the patient so they know what is written on and for them.
All-in-all, I think this is where all health data is driving, back to the patient. This is a good thing. We physicians are becoming more and more of a consultant/advisor then ever, and I believe this is for the better health of our patients.
Ben