This is for you, Susannah Fox – This week’s photograph is of Regina Holliday and Cindy Throop who helped organize a flash mob in Dupont Circle. Regina’s shown myself and others of the power of the artists’s brush in creating change. I wouldn’t have envisioned this a year ago for health care.
The scene on Tuesday reminded me of another photograph I took a few weeks ago, while at BWI airport. It is of a letter written to Thurgood Marshall in 1954 about his efforts – “It is really wonderful what can be done with these television cameras.” Less than a mile from the spot Regina is standing is where Justice Marshall planned the strategy to overturn school segregation. The building is now called the Thurgood Marshall Center, pictured below.
I am actually in this week’s photograph, with @ChristineKraft, @ReginaHolliday, and @AlanViars , who are, in my mind, some of the best thinkers in the health care community. We visited as part of a Tweetup that was arranged by @CindyThroop. How did we get exposed to innovative ideas before the modern tweetup?
@ePatientDave was also present, radiating with excitement about his work in DC this week, as well as with radio waves from his portable Wi-Fi hotspot, to assist those of us without cell coverage in the underground venue. He’s a provider of all things good wherever he goes….
I specifically remember what Regina and the group said (in paraphrase) – “Show me the DNA of a high quality doctor.” and “Demonstrate that this/you are a doctor that I’m going to love.”
This is a very different need than “Tell me what I need to know about when to get a flu shot.” Not that patients don’t want this information also, of course.
With that in mind, my colleague Rahul Parikh, MD, a practicing pediatrician and accomplished writer across many venues, worked on an experiment together and we’d like your feedback.
This is him tweeting one way, let’s call it “standard” (more “education”):
This is him tweeting a different way, let’s call it “DNA – Enhanced” (more “engagement”):
Here’s the input we would like:
Do you notice the difference in the content/approach?
Which way would you want your own doctor. to tweet? (or a different way not shown here)
If you were looking to choose a doctor, does either approach draw you more to a potential physician?
Thanks for your comments in the comments, and thanks again to the patients, who continue to demonstrate that they are more than willing to help us perform well for them – all we have to do is ask.
Kudos and sincere thanks to the National Partnership for Women and Families and its hosted Consumer Partnership for eHealth for hosting the discussion entitled ““How Access to Information Can Empower Patients and their Caregivers” yesterday. It was the right place, right time, right group of people. I think we nearly split the atom.
e-Patient Dave in his post on e-patients.net did a nice job of summarizing the feeling on the part of the patients in the room, so I’ll just post what was going through my mind here.
After showing the images that I previously posted on this blog (you can see them here), a question was asked about sharing of lab results, imaging results, physician notes, and the like.
As you can see from Dave’s review of things, there appeared to be a difference of opinion about “when.”
The problem I see with the response of “yes, they should have their results; however…” or “yes they should see their data, but…” is that it reminds me of so many conversations I have had that go something like this:
“Ted, minorities (such as yourself) should have equal rights, no question about that. Just not now.”
That’s the reality I have lived, and I think for someone who is struggling to be respected in our health care system, this is how responses like the above can come across, as Dave’s blog post shows. This is why I turned to Dave and Regina and asked them to provide their personal experience, which they did, and very passionately so.
Instead of wondering,”Should the doctor see the results first?” let’s ask a deeper question: “When can patients have their data?” And…in more and more health systems, the answer is “whenever they want it,” with off-the-charts satisfaction on the part of patients and clinicians.
Yesterday really helped me understand that this is not going to be an easy conversation, however, I’m happy to participate in it, and invite the patient to be in the room while it is happening.
Why? Because I may have gone to medical school, but I have not yet had stage 4 metastatic renal carcinoma or cared for someone who has.
We can listen to the thoughts of the audience as much as we listen to the thoughts of the panelists, and you.
At today’s presentation at WHIT 5.0, I asked every audience member to write down something on a note card about what they heard today about using social media to engage patients and change the health care system. They could write a comment, a question, or just “have a nice day,” as long as they wrote something.
Unfortunately, we ran out of time to go through these with the panel. Fortunately, the conversation can now continue in cyberspace, because the questions are written down.
Take a look. Answer one, or answer them all in the comments.
A few years ago, I was asked to prepare a presentation for leaders with two simple directives: “Ted, no powerpoint slides, and no talking heads, please.”
My response to that was equally simple: “Okay, then you’ll get to listen to the real boss/CEO/Board, the member.” (recall that Group Health Cooperative is member-governed)
Ever since then I have kept trying to include the patient perspective, and noticing that when it’s included, how compelling it is (see this photograph for proof).
Sometimes, I’ve been told, “Ted, a patient wouldn’t be appropriate for this setting.” But I still kept asking….
Our session is in the section entitled “Consumer Connectivity: Engagement Through Social Networking,” and the title of our discussion is, “Beyond the PHR: Promoting participation at all levels: internal and external; patient, family, community.”
Holly is representing the health system perspective, though her work as Vice President of Public Relations and National Stakeholder Management for Kaiser Permanente.
What they have in common, is that they show how sometimes, your life can change, literally overnight, and social media tools are means to teach and learn from people “just like me,” to make a lasting difference.
Beyond the title, I’ve been asked to summarize what this panel will be about, which I’ll do here, with main points:
How does a health system foster broader participation after connecting 3.3 million patients online to their health care teams?
What are patients’ expectations for participation in health and health care using social media?
How are patients and families leveraging social media to participate in reshaping the system itself?
I haven’t yet run these by Holly, Dave, and Regina, they are to help potential attendees know what the session is about, so there may be edits. Or if you have suggestions, post them in the comments, please.
What I see happen when this perspective is brought in is that people in the audience become less afraid/more confident in taking risks to do what they can to help people. That’s what I want to promote.
The dream part is that I engage organizers of a respected event like this to bring these exceptional experiences directly to their audiences. So, thank you WHIT 5.0, I will do my best not to let you down!
Speaking of exceptional experiences. Here is Regina’s. We’re on at 10:55 am, on Day 2, please come and join us.
Disclosure of material connection: I have not received any compensation for writing this content or moderating this panel; I am an employee of one of the organizations represented on the panel (Kaiser Permanente); I am receiving admission to the event sessions as a speaker.
I attended a smallish get together yesterday organized by Christine Kraft to think about Health 2.0 / DC in the epicenter type things, where we thought about some of the trends in social media use, social media use by physicians and medical groups (I got a lot of help on this one), journalists, and finally, a real story about a patient’s experience, here in DC, that really brings to light a problem with a meaningful use definition that doesn’t include “and the patients can see the data.”
I’ve been thinking about the idea that meaningful use must include “patients can see everything” since ARRA came out, and see my first mention of it in the Twittersphere around April 22. I have noticed since then that the idea seems to be picking up steam – initially I was told by some that this would be a “distraction” to the conversation. Now I’m sure that it’s not. Read on…
This is the story of Regina Holliday – it’s really worth a read, and I’ll quote some of it here:
Why do we have more transparency in special education law then in medical care? Why do we have more access to information on a box of Cheerios then on a medical chart? Why isn’t there a medical counterpart of the Freedom of Information Act? People tell me just concentrate on your husband, your family. Too many people have quietly done that. Too many wonderful fathers, mothers and children are gone. Too many graves have flowers on them. I will fight. I will not stop. I will not be silenced.
Regina told us her story in person, accompanied by the notebook of her husband’s medical record, which she was only allowed to get on paper, at $0.73 a page:
What struck us so much was the fact that his all started just a few weeks ago on March 27, 2009. A life threatening diagnosis creates an amazing call to action. As we learned about all the different ways that her husband’s care was potentially impacted by lack of information, our mood became more and more somber.
Regina happens to be an artist, and what she’s doing with her experience is as impressive as the challenge that she and her family is facing. At Washington, DC’s Pumpernickels Deli, she’ll be painting a mural of the Medical Facts of her husbands kidney cancer, patterned after the nutritional facts label.
The installation will be large (6 feet tall), in color, and will be permanent. It may just become a monument to information disparity in health care. Regina told us that the mural may be completed by this week. It will be interesting to see the reaction of the community to the art piece.
In the meantime, I still think it’s worth asking:
Is e-prescribing as meaningful as it should be, if patients and families can’t review what’s prescribed and know what they are supposed to be taking?
Is interoperability meaningful if it only connects doctors to doctors, hospitals to hospitals, and not patients to their health information?
Are quality metrics meaningful if patients do not get to see them and use them to make decisions about how their care is delivered?
Finally, if all of the things that are currently being cited as meaningful use not reviewable by the people whom they matter to most, the patient, what’s the incentive for anyone to make sure they are accurate? Everyone prizes accuracy, and the best organizations in the world know that the way to ensure it is to make sure that people who generate information see the impact of what they do.
It reminds me of this quote:
“The key to the success of Ryanair and other low-cost airlines, lies in the way they think about combining processes. Ryanair’s cabin crews also do the cleaning inside the aircraft, so if they make a bad job of it they have to face complaints from passengers. In more traditional airlines the cleaners never see the passengers.”
- Yves Morieux, Boston Consulting Group
Comments, as always, welcome. As well as a trip to the Pumpernickels Deli….
"When I picked up my paper, the images were joyful, depicting happy same-sex couples who were finally able to apply for marriage licenses in our nation’s capital. I often tell my students that, in my humble opinion, one purpose of government is to help people be happy. The DC government did a good job on Wednesday." […]
