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BloggerCon III: Medbloggers

November 11th, 2004 · 4 Comments

Highlights from the Medbloggers Session led by Enoch Choi at BloggerCon III.

I saw this session on medicine and blogging as specific application, implementation and practices of values and principles discussed in other sessions. For example trust was a common theme woven through various conversations on Saturday: how do we trust each other?

In the medbloggers session, this theme of trust emerged as a factor in relationships between medbloggers and patients as well as the cases that are shared on-line. We discussed how patients can trust medbloggers. What makes a medblogger credible? How would we readers know whether to believe a health care blogger? Can we trust what cases are posted on-line? Will the community correct and censor those who are not honest? This question was a specific application of the Core Values of the Web.

Another idea that surfaced was the concept that blogs could help patients learn how to help their doctors. What can we do with blogs to build patient-physician relationships?

I would love to read a blog written by our pediatrician. I hope she would share slices of her life as a mom and island resident (as she is) but I also would appreciate if she would share a little of what it is like to be in her role, and how patients and parents can help her. I don’t read many medblogs, but the ones I do help me understand more what it is like to be a physician: the pressures, concerns and joys of practice as well as a good glimpse into who they are as human beings, whether it is favorite foods, fashions or family fun.

One possible use of blogs that was mentioned was the potential to help share information between patients and physicians. I would appreciate more transparency. I like to see the data myself. For example, I have been told I have “high cholesterol” or “normal cholesterol” but what is more helpful to me is to hear the exact number and what range it fits. I could see how private password protected blogs could be used internally between physicians and also to help communicate with patients. I would like to know more behind the reasons my physicians use to make diagnoses.

Privacy is a concern. Enoch mentioned that if patients provide consent for their information to be shared, both physicians and other patients could benefit.

The session ended with many fascinating questions still to discuss. I shared an example from my experience regarding referrals. After I posted a positive piece describing a pediatric ophtamologist we liked, I noticed that my post appears in a Google search for this physician. The opportunity to share patient perspectives, to critique and endorse doctors through blogs is a potentially powerful one.

I’m also intrigued to hear how blogging is changing the practice of medicine itself, how soon new research can be implemented, the role of journals and dialogue between doctors.

Enoch shared that as a physician he can’t blog about specific situations he sees but he encouraged everyone to write about experiences as a patient. After all, we all are patients.

I wonder whether a session that focussed on the effect blogs could have on health care would be a good approach. I fear that people might have thought this one was for medbloggers. But everyone needs health care. Everyone is a patient, and every patient who blogs can affect others by writing about treatments, experiences or physician referrals. Communities are already forming around health issues. Imagine what could happen…

Thanks to Enoch for tacking a huge topic, for listening to everyone and graciously coordinating all the contributions. I hope we can continue to discuss these issues as they are implemented.

Enoch has already posted his preview notes and a thorough transcription of the session.

Partial transcript from my notes of the session follows…


What I’ve written below is a partial transcript, my own notes from the session. There may be errors. I am publishing them here in case they are helpful to others. Please correct me if I have posted inaccurate quotes. Thanks.

Lisa Williams:
….what is it like from the doctor’s point of view? ….but I don’t understand what it is like to get up in the morning and be a doctor and lfill out those papers…because I was really sick and I was pregnant..,. I was utterly obsessed with it….I was lying on the couch reading medblogs trying to see the clue….there’s a reason why when you turn on the tv it’s cops doctors and lawyers…it’s like ER without the gore….

…medical webloggers…how much can we really disclose? ..there’s a lot of constraints that we would like to be able to share and help our patients understand….we want to give them a sense…this is your best…on the one side the desire to explain and expose…

Matthew Holt:
I write the healthcare blog. I know nothing about doctors…I know about health care…which has nothing to do with health…trying to make doctor’s lives easier..I’ve never heard that from a patient before…there’s actually something that’s going on in the health care business at the moment…this is an industry that has been based on the hands-on meeting of the doctor and patient at the same time….the other thing it’s struggling with is that very little medical care happens in that meeting….the personal health ecology of people with diabetes…there are a lot of tools that have been developed mostly by patients themselves…but there’s been very little support….one sees the tip of the iceberg….other people who have a chronic problem…the tools that I and other people have been involved in developing…things like listservs…but they haven’t really progressed…so you haven’t seen too much change in that arena…

using blogging or some kind of communication tool to access many people at once…

how can we get medical providers to get more involved? they operate …they don’t see that as a part of their role as a healer….one of the last things they touched upon was the idea that patients can come together in a group visit…it actually touches on a couple of issues that are very interested…they can hear the discussion…so that whole group gets the wealth of knowledge…when there is a physical diagnosis part of it…it is an idea about the future…in this public sphere…each of these patients has given their consent to the provider and to the other patients in the group….if enough patients give consent…then we could have some of the very compelling writing, documenting…those stories are really some of the most…the physicians who are in training are more engaged in journaling

their expressions…been part of a community and can relate an experience in that…

Jeff Tidwell
comments turned on or not?what your experience has been with that..?

Enoch: I know Matthew’s blog comments are off

I’ve never had comments on…initially it was fear that no one would read…I worry about my comment section generating…I have certain views..there’s another popular blog…I feel I would have to police…he talks about malpractice…I’m worried..how much people are interested in particular segments of the medical community….I suspect almost all of the medical blogs have gotten to the point where they are trying to define a particular topic.

Who’s the atudience you’re trying to reach? My weblog is geared towards..the idea was to create a blog where I’ll feature some cardiovascular news and cardiography videos
I have my comments on …I try to stay away from politics and issues such as business issues…I believe that issues often ignite….I have no interest in that…in terms of patients…I had I think anesthesiology is one of the most obscure professions…I felt a little bit uncomfortable….

many of the early medical webloggers started…Jacob R…people interested in medical technology…we didn’t have much of an audience…we really wrote for each other…Grand Rounds is in medicine…Grand Rounds an interesting case will be presented by a resident who has been up all night…Grand Rounds…the most interesting patient-oriented weblog entries…what are the processes that I’m going through…often times I don’t often write in a way that would be completely approachable by a patient…I think that’s a really interesting thing…there’s a dichotomy between the professional medbloggers and others who are writing for patients…

Lisa W:
I’m a blogger…but I write about all sorts of things…bloggers who focus only on one topic and bloggers who post a lot tend to get a lot of traffic. I think a lot of bloggers…I blog for myself and if other people want to come along for the ride….the tools we have allow us to sort blogs but not blog entries…because we could have…like Flickr …what we don’t have in the blogosphere is that kind of way to share taxonomy.

You should talk to David Sifry…..Hank…Scott Johnson …trying to figure out ways to do that…are there any place where three or four people…it’s an easy way to aggregate…it’s amazing to me that there aren’t more of those…

medblogs.com – aggregator

Matthew :
– as that grows – much more targeted blogs….ranting, photo thing blog, policy wonks….

Michael Levine:
podcast from the swamp
I think that what we’ll find is a great tool to facilitate discussions…not only text…you can put up pictures…you can put up video…a lot of my friends are in medicine…on the one hand you can say information sharing on the user level is dangerous and misleading…on the other hand, any sort of information sharing is good….consider the source…just like basic research follows certain scientific guidelines, some information will be hearsay, some will be misleading….

it’s so important to be very specific and very accurate when you’re having do with issues of life and safety…as opposed to less important things….what you feed your roses…I think we’ll all agree that if you’re talking about someone with a congenital heart defect, if you take Vioxx, I odn’t know anything about this, and I’ve taken Vioxx a couple times…that’s worries me…but I’ve got nothing to base that on except the hearsay that I’ve heard on the news…what would be useful for my wife or other doctors to provide very well-founded, well-thought out information that’s safe. that takes into account the professional judgement that you have as a medical practitioner…

one things amplified…is he mentioned there’s a concern on the medical providers part…confidentiality…there’s also concern about exposing my decisions to the great spector of lawsuits…that there are a lot of data that goes into the doctor’s decision…I’ve had high blood pressure for the past 30 years…folks at Standford spent a year trying to figure out what the problem was…you and I have everybody in this room knows…she probably spent 30 seconds…but it’s not like she sat down and spent the time…she doesn’t have time for that…how can we expose the raw date to people, to allow them to shop the data around? I can go get readings off my car and shop them around…can…we’re moving from everything happens at the hands-on doctor’…patients are poorly handicapped due to their lack of access to data…I think blogging’s an exciting way to bring this to more patients..

Some patients really want to see all the data that goes behind the decision making…some people are more interested in qualifications…where did you train…they’re generally happy to come and see physicians…there’s such a dichotomy…I think …they really want to see the data…what’s the background…there’s not much of that out there…they try to explain the medical articles in the journals to be able to say this is why…these are your alternatives…

I think, Michael, your point that some people are interested…how do people on the web really develop trust…many readers …are not so interested in where you were trained…they want to see that they can trust your writing and have a sense of who you are…and develop an agreement with a world view and an approach to life…I’m wondering in the future as more and more providers blog whether or not they’ll expose enough of their impersonal life…many patients

Participant who had been in the medical genetics industry(?)…
I don’t read blogs to get medical information…I do read blogs to find out referrals and the patient’s experience with health care providers…I’m developing this application that empower bloggers to publish their information to other blogs….privacy issues and legal issues….allowing the blog consumers to aggregate high quality blogs on the same page….people tend to use blogs in various ways…I don’t think patients should base their medical information on blogs.

the police state of lawsuits and regulation, duty and privacy that doctors have…and it’s amazing that there are any medical weblogs as all…I think of it has….of course they are pseudonymous….of course, a few people are dissidents, out there in the open, I completely disagree that medpundits…people who do are privileged because they can… the punishment for being a human being is out of proportion for the actual crime of being a human being…

you’re going to be outed, people are going to find out who you are….
blogging under a pseudonym does make for compelling reading…that may abridge some of the medical ethics…

what we are discussing in many ways is the real information, you can trust the information, it’s not hearsay….good information…people will understand, other blogs will criticize…will be marginalized….how blogs will affect the science of medicine itself…there are a number of issues blogs can offer to the medical profession….it used to be …the peer review process….I think hopefully blogs will ….then in this time article comes out…how information spreads through the blogs will help medicine…as new information comes out…the other thing is that people will be able to comment on the applicability of new research…doctors can comment to each other…another thing is through medblogs and through RSS conferences will be able to publish as they come out…how can we be sure medical cases are real and not made up?

can we completely trust these cases on line? …hopefully another specialist will point out…that just doesn’t make sense…that hopefully will be found out…it seems like many of our topics..how can you trust any of this? How are they coming to trust people on line? Are we going to trust reputation systems on-line?….this really doesn’t make sense…is there enough of a community that will put down unorthodox ideas that are possibly medically harmful…and it’s arguable where…

Jeff from WebMD:
what we found was over time those people who had some consistency…their voices became louder…this is the same instance of that…a lot of the questions we are asking out here is what can you believe on the internet? Those sources you can trust over time, those that fail greatly fall greatly as well. You can find a lot of stuff about building bombs on the Web and eventually they fall away. Any time there is a collaboration possible and people can have a voice in a two-way dialogue…blogs are going to become a piece of the information pie and they go out and start searching around

slowly moving into the mainstream.. a scientific discovery takes more than 7 years…doctors are doing things at massively different rates…more volume could really improve…medical care….

What motivates you to publish? what motivates you to blog?

we’ve got some passion that we want to share, there’s an audience out there…we’re writing and we’re trying to share the stories….I think for a provider there are a number of things in their mind…they can identify…I think that that advice is pretty good advice….for providers also it is a feeling that we can leverage our knowledge…we really do want to share and be able to care….there this passion for writing…that other physicians or patients will be able to understand…we’ve all been patients as well…that’s one way …we can be perfectly open…if you can share about your own experience…if you can refer specifically to the doctors and to the nurses who provided that care for you…the aggregate comments not only make a difference in terms of public relations for the advisors…there’s a pattern of care…who are the people that are providing care…there’s so much more..

Tags: bloggercon

4 responses so far ↓

  • 1 medmusings // Nov 11, 2004 at 8:19 pm

    Bloggercon III Medblogger Session Transcription

    We have a passion to share our story, we’re writing to express something that people will identify with and be able to take to heart, a way to leverage our knowledge and share, a way to help other physicians or patients to derive value. Do one Teach o…

  • 2 antifaust // Nov 15, 2004 at 12:16 am

    links for 2004-11-15

    Bloggercon III Medblogger Session Lots of medblogging-related issues tackled here, like trust, privacy and the sharing of medical information. (categories: issues medblogs) Hybrid Medical Animation A site with lots of good illustrations and animations…

  • 3 antifaust // Nov 15, 2004 at 12:51 am

    Medlinks for 2004-11-15

    Bloggercon III Medblogger Session Lots of medblogging-related issues tackled here, like trust, privacy and the sharing of medical information. (categories: issues medblogs) Hybrid Medical Animation A site with lots of good illustrations and animations…

  • 4 medmusings // Nov 16, 2004 at 10:54 am

    Bloggercon III Medblogger Session Transcription

    We have a passion to share our story, we’re writing to express something that people will identify with and be able to take to heart, a way to leverage our knowledge and share, a way to help other physicians or patients to derive value. Do one Teach o…

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