This morning on Facebook, an SPM member (who were you??) pointed out that it was seven years ago today that “Doc Tom” Ferguson, the visionary who foresaw the e-patient movement, passed away unexpectedly while being treated for multiple myeloma.
Click the image (or this) to visit his site for more information, and just to say hi. This blog was a new project of his; his final post here was, not surprisingly, Voice of the Patient, two weeks before his death. He was working on the e-patient white paper, and his colleagues (listed in the gray sidebar on his site) finished it in the coming year. Today it’s the cornerstone of our movement.
I wish I’d met him, but what we do here illustrates that the work you do can live beyond you. So, I say: spend your time wisely. Expand what’s possible for humanity.
And when you’re over on his site, wave for us all. :-)
Are clinicians from Mars and e-Patients from Venus? My experience is e-patients and clinicians can agree that they seek best health. Yet there is such a disconnect, such frustration, so much of the time. Participatory medicine strives to bridge the gaps between patients, caregivers, clinicians and health care systems. Caring about best health and getting to best health are very different.
In my journey with multiple sclerosis I find that each member of my very supportive and effective health team experiences the elephant differently. My physical therapist’s goal for me is to strengthen my left leg, ensure my ability to walk safely and balanced with a cane. My neurologist tracks my medication compliance and side effects, my limb strength, my brain scans, my exacerbations. My primary care doc tracks my weight, my immunizations, my cholesterol, my liver enzymes. My acupuncturist balances my chakras. My wife watches my mood, my balance, my energy level. For my 2 year old grandson, it’s “Opa no go kaboom.” My 4 year old grandson wants me to be a jungle animal with balance. The health team views me through the lenses of their particular profession, skill, and compassion. I care about all these things, but they are not me. The parts do not make the whole. Most important to me is that I can live life: be with my family, play music, work, think, write, contribute. I don’t want to be more than a little bit of a burden.
New analysis of the Pew Research Center’s 2010 health survey results show differences among three populations: veterans of the U.S. military who obtain their health care within the Veterans Health Administration of the U.S. Department of Veterans Affairs (VA); veterans who are outside the VA system; non-veterans.
The full article is behind the pay wall for Military Medicine, but the abstract is available and I thought I’d summarize some key points below:
- Veterans in the VA system use the internet less frequently than do other veterans.
- When they do access the internet for health, veterans in the VA system are more likely than other veterans to look for information related to Alzheimer’s disease, memory loss, or dementia.
- Since the study is based on a phone survey, it may not be representative of all veterans because of the number of current homeless veterans who do not have a landline or cell phone. However, there are enough intriguing patterns to suggest the need for further research.
This guest post by Michael L. Millenson originally appeared on The Health Care Blog. Michael is president of Health Quality Advisors LLC in Highland Park, IL; the Mervin Shalowitz, MD Visiting Scholar at the Kellogg School of Management; and a board member of the Society for Participatory Medicine.
The Patient-Centered Outcomes Research Institute has just appointed four new advisory panels that will help guide hundreds of millions of dollars in research grants. Unfortunately, while PCORI released the new advisers’ names, it neglected to tell the public who the advisory panel members really are.
Let me explain. PCORI says its advisory panels “will be instrumental in helping us refine and prioritize research questions, provide needed scientific and technical expertise [and] offer input on other issues relevant to our mission.” Panel members represent specific stakeholder groups mandated by Congress and are appointed for one year, but they can re-up for another term.
Four years ago this week, e-Patient Dave published, “Imagine someone had been managing your data, and then you looked,” and forever changed the national conversation about health data. I have described that post as an earthquake — a surprise to those who were not looking for signs and indicators of trouble, not a surprise to those who listen and learn from patients. If you’re new around here, read the post and skim the 175 (!!) comments to get an idea of its impact.
I’d like to honor the anniversary by raising some new questions about health data in this cross-post from my personal blog:
Who provides the fuel for the health data fire? Hint: Look in the mirror.
“If iron ore was the raw material that enriched the steel baron Andrew Carnegie in the Industrial Age, personal data is what fuels the barons of the Internet age.” – a line from Somini Sengupta’s article in the Sunday New York Times, “Letting Down Our Guard With Web Privacy.”
I think personal data is fueling health innovation, which is why I hope Sengupta’s article is widely read in the health world. Who are the barons in the new health care enterprise? Who are the serfs? What assumptions are being made and what choices do people have about their health data — and are they aware of them?
Well well well, dare I say the times are changing? Not long ago all we ever heard was “Stay off the internet.” But a friend just said his endocrinologist and his radiologist BOTH recommended ThyCa.org to him! (Twitter: @ThyCaInc)
It’s “created and maintained by thyroid cancer survivors,” with a long list of physicians as partners and advisors:
This website has been created and is maintained by thyroid cancer survivors. Since October 1995, we have been developing a network of services that link thyroid cancer survivors and health care professionals around the world. Our mission is simple:
- To Educate, so we and our families better understand our disease.
- To Participate, so others learn from our experience.
- To Communicate, so we and our health care professionals better understand each others’ needs.
- To Support Research, for a future free of thyroid cancer.
As we in our Society think about the social change that will be required for all providers to welcome good patient communities, a discovery like this merits thought. I notice a couple of things:
On Monday, March 25, 2013, ONC, in collaboration with Cornell University, launched a new web platform for obtaining public input to inform health IT strategic planning. Check out the new PlanningRoom site, and provide your thoughts.
ONCs initial focus is on consumer eHealth. To encourage public input to inform the consumer eHealth strategy, ONC is partnering with Cornell University’s eRulemaking Initiative – an academic research group working with Federal agencies to increase public participation in government decision-making.
You can visit PlanningRoom now through May 9, 2013, to participate in discussions and provide comments on specific topics. The site includes discussion topics and questions to help guide the conversation.
I visited the site and left a few comments. It’s well organized and easy to use. I recommend that you all visit and comment.
Please join us for a tweetchat this evening – Wednesday March 20 at 8 PM ET/ 5PM PT. We’ll talk about:
- What’s new with Gimme my DAM Data #gmdd ? - Wall Street Journal picked the story at SXSW conference
03/18/wall-street-journal- picks-up-gimme-my-dam-data- song/#.UUmxrBysh8E
- Blue Button Plus – why should patients fight for it? #bluebuttonplus #abbi
- CommonWell alliance – How can we make sure the alliance is designed so it will give patients their data and will use the agreed on standards: Direct and Blue Button Plus #commonwell
You can use your favorite Twitter application and just follow the hashtag #s4pm and respond using the same hashtag or use the link
You can follow the discussion even without having a Twitter account. But you will need to login to answer any questions.
I’m looking forward to seeing you there!
For the patient safety crowd – which is all of us, when we shop for medical services:
Cheryl Clark of Health Leader just posted this on Facebook, from this weekend’s Boston meeting of the Association of Health Care Journalists
“For the first time, providers, payers, and patients now have an enormous searchable database containing documents detailing about 8,000 serious federal safety rule violations—many of which have caused serious patient harm or death—at about 1,000 U.S. hospitals since January, 2011.
“The documents, which resulted from federally authorized complaint investigations and are called “2567s,” were released over the weekend by the Centers for Medicare & Medicaid Services [CMS] after a long-standing request from and collaboration with the Association of Health Care Journalists. The AHCJ has organized the document files on a searchable website on its site, http://hospitalinspections.org. …”
The whole article is here: http://www.healthleadersmedia.com/content/QUA-290217/CMS-Unveils-Hospital-Violations-Database
Not only did famed cardiologist Eric Topol wear his brand new Regina Holliday “Walking Gallery” jacket this morning, for his major keynote address at the HIMSS health IT conference; he cited several other members of our society, including Hugo Campos. Then he ended with a huge crowd-pleaser: this mash-up of the famous scene in the movie Jerry Maguire. He and a colleague provided the voices: