Posts Tagged ‘epatient dave’

When can patients have their data?

December 15th, 2009 | Popularity: 6%
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What a challenging conversation this can be.

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.

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Voice of the Audience: WHIT 5.0 “Beyond the PHR”

November 10th, 2009 | Popularity: 4%
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WHIT 2009-Beyond the PHR -Audience Comment - 13

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.


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Moderating a Dream Panel at WHIT 5.0

October 19th, 2009 | Popularity: 4%
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The 5th Annual World Health Care Innovation and Technology Congress (WHIT v.5.0)

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….

This time I wasn’t told that, and so I get to bring that perspective in the form of great people. They are Dave deBronkart, Regina Holliday, and Holly Potter.

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.

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Participatory Medicine: “There might be something to this”

October 14th, 2009 | Popularity: 3%
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e-patient Dave wrote me recently and asked:

Do you have a post you’d like to submit, in which you discuss Participatory Medicine either philosophically or from the physician’s perspective, so that docs and health leaders who read it think “Man, there just might be something to this”?

His request hit on a self-acnkowledged weakness (or strength, in the social media world) of mine, which is that I am not good at being prompted what to write. So, even though I missed the terrific Participatory Medicine Grand Rounds, I thought and thought about it, and I decided (spontaneously) to write something, and to show something.

What I want to write

In a post I wrote after visiting the team behind the MiVia.org personal health record for farm workers in California, I laid out this scenario. See if it helps you visualize what it could be like not to participate in your own health care.

Imagine that you were working internationally and had a serious stomach ache and needed to see a doctor. When you went into the medical clinic, the doctor asked you what medicines you were taking and what the status of your medical conditions were. What if you didn’t know or couldn’t tell them because you were in so much pain or you had seen a doctor but they didn’t give you a copy of your medical record. What if you lived in that same community for 5 years, but weren’t sure if you needed any medicine or treatment to prevent illness, and no one was keeping track. What if it felt like you didn’t belong….

Maybe this scenario is not far off from the health care you receive today, in the United States.

The title of the post is “Because Everyone Wants to Belong.” An important reason for supporting Participatory Medicine is that everyone not only wants to belong, they deserve to belong.

What I want to show

This is a piece of art that grabbed and made a huge impact on me within seconds of viewing it, at the National Portrait Gallery.

It shows the work of a person who fought to promote participation, Eunice-Kennedy Shriver. The artist is David Lenz – “Lenz, whose son, Sam, has Down syndrome and is an enthusiastic Special Olympics athlete, was inspired by Shriver’s dedication to working with people with intellectual disabilities.” (source: wikipedia)

She set out to change the world and to change us, and she did that and more. She founded the movement that became Special Olympics, the largest movement for acceptance and inclusion for people with intellectual disabilities in the history of the world. (from Statement from the Shriver Family)

You can see the drive … in her eyes. This is what excites me about participation. I can’t help it.

See if you think there’s something to participation in any or all of the above; thanks for reading, and watching.


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