Breaking News at Hematology Meeting – for Patients

Andrew Schorr is the founder of Patient Power, LLC, and shares this dispatch, his second for e-patients.net:

I had a whirlwind weekend at the Moscone Center in San Francisco where I broadcast five and a half hours of live interviews with leading hematologists and hematologist/oncologists on the latest news in a variety of chronic conditions. The audience was patients who could ask questions by calling our studio or via email.

We covered chronic myelogenous leukemia (CML) where there are now three life-saving drugs; multiple myeloma where there are now exciting combination therapies, hemophilia and bleeding disorders where regimens are being simplified, sickle cell anemia where monitoring is extending lives, cord blood transplant where the lives of many who now lack donors with current approaches may have new hope, lymphoma where there has been an explosion of research, and finally chronic lymphocytic leukemia (CLL).

I had more than a passing interest in CLL as I have been a CLL survivor for 12 years and was excited to see that the big news from this 50th annual meeting of the American Society of Hematology was worldwide phase III validation of the combination therapy I received in a single center phase II trial 8 years ago.

So there was plenty to report and leading experts from university medical centers, including my own doctor in CLL, were delighted to come down to our interview room near the press room and give their perspective on the latest news, which often included their own high profile study results.

With a small electronic box, about the size of a tissue box, and two microphones and an Internet connection, I was able to transmit these programs to our studio in Florida and stream them live on our web site, www.patientpower.info. The replays are now distributed widely including on the prestigious Oncolink site and on several university medical centers sites and patient advocacy groups. All the content will also be featured soon on Microsoft’s www.healthvault.com.

This was the latest in my efforts to connect patients with chronic conditions with the experts who are making news in those conditions – as it happens – and to allow patients to ask questions in live interviews. It was thrilling, and we had great support from ASH, the society who put on the meeting.

I believe this bridging of the gap between patients and the doctors who educate their doctor will accelerate and to great benefit of patients. I am happy to play a small role.

You can see all 11 interviews at:
http://www.patientpower.info/ashannualmeeting.asp

Let me know what you think and how we can improve on this service.

By the way, there were no pharma sponsors nor involvement in any of this. Frankly, I funded all of this as a service and a bit of an experiment. Medical centers were very helpful and may support this approach in the future.

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Comments

11 Responses to “Breaking News at Hematology Meeting – for Patients”

  1. Wow, Andrew, am I glad to meet you! What you describe is a vision of a BIG part of a great new patient-centered future!

    Great work, and thanks. I hope to get to view your archives this weekend.

    Susannah, John, Gilles, everyone, methinks it’s time to start adding things like this to the Wiki version of our white paper. That thing’s 20 months old, and at the rate people are doing new things, that’s an eternity out of date. :)

  2. Susannah Fox says:

    Andrew, thank you again for writing this essay about your experiences as an e-patient reporter. Your podcasts are essential news for a niche group. I would love to hear more about the challenges & opportunities in this space as well as other examples – is there a network of condition-specific podcasters out there?

  3. John Norris says:

    I really like the live participation for this event. Any idea how many folks were involved? Was it well publicized? How did you filter the questions coming in?

  4. Thanks for the comments. Our report shows about 395 people have now downloaded the CLL webcast which was promoted on the CLL listerv at acor.org. I estimate about 30-40 people heard the program live and we received about 20 questions via email, which I triaged based on what seemed right at the time. M.D. Anderson is promoting the replay. The acor.org myeloma group has been made aware of the replay on that subject, but I had no time to tell them in advance. Now I am working on CML.

    I did try to work with some associations and the Sickle Cell Association helped out and, I hope, is promoting the replay. But I was disappointed with the Hemophilia Foundation. They did not respond. I did a webcast on that subject but without their help nor any help from any of the companies with leading products. Strange.

    I also produced programs on lymphoma, cord blood transplant and anti-coagulation news (like for people who take Coumadin). I have to work on getting the word out on those. The Univ. of Pennsylvania has been great about promoting programs I produced with their docs including on Oncolink.

    (By the way I am looking for a social media “whiz kid” to work with us as a “virtual freelancer” to help with online promotion of content. Since it’s one thing to produce it, it’s another to have patients know about it.

  5. SusannahFox says:

    Post: Andrew Schorr on e-patient podcasting from American Society of Hematology meeting http://tinyurl.com/5hs2ut

  6. John Norris says:

    Thanks for the details. From the stats, it looks like you are giving folks the info, and access they are looking for.

    It is a bit odd that more folks didn’t come on board to help you, and the audience, out. Promotion is a whole different ball of wax.

    I’m active in the Second Life healthcare community and wonder if your live events would go over well there. I think there are quite a few folks interested in the content. There may be some good synergy with those in the audience able to chat amongst themselves as well pose questions.

    I’d like to say streaming into Second Life is easy, and I think it is pretty straight forward, but don’t really know. If you are interested, I can find out more, or give you a few contacts.

  7. My wife works in marketing at Microsoft where Second Life is gaining steam. She has promised to show me how our webcasts for patients could find a home there. Meanwhile I am exploring streaming our programs 24/7 on Internet radio.

    As for promotion, it’s interesting how some of the larger health websites are looking for content. I might structure something with them. As for advocacy groups, it varies, since some are very focused on receiving large chunks of funding from pharma. Because of that they are reluctant to partner with any content provider and promote someone else’s programs – no matter how authoritative – because there is no financial benefit to them. Sick, I know, but they are “in business” and do not want to dilute their brand.

  8. Susannah Fox says:

    PF Anderson, aka Emerging Technologies Librarian, has created a wonderful starter list of health podcasts.

    If anyone has favorites, please post them!

  9. New news: My friend sent me a desktop Internet radio. They will soon be in cars – if any one buys a car these days (:. So I am programming 24/7 content from our encore presentations of patientpower.info webcasts plus our live webcasts to run on this stream. We’ll still have to raise awareness, but I love being out front. Stay tuned!

  10. More news from this weekend: I decided to move ahead with a 24/7 stream of our webcasts with experts and inspiring patients. I am calling it “Patient Power Radio” and it’s a new Internet Radio channel that you can listen to anytime at:
    channel.

    That means people can listen on their computer…but also on new desktop Internet radios and ones being installed in cars. Unlike Satellite radio, it’s free. And we have not been running any advertising – only announcements from the major medical centers like M.D. Anderson Cancer Center, UCSF, Northwestern and others that help support our programs and a few U.S. government health public service announcements.

    I’d love to know what you think and any suggestions on ways to spread the word.

    I now have probably 1,000 Patient Power programs in our library so we are trying out having a single health theme each day. Here’s what we are doing this week:

    Monday: Orthopedics, joint replacement, arthritis, back pain, spine surgery, sports medicine
    Tuesday: heart problems, arrhythmias, congenital heart problems, pediatric heart problems, cholesterol, stroke
    Wednesday: autoimmune conditions – MS, psoriasis, psoriatic arthritis, lupus, scleroderma
    Thursday: blood cancers: lymphoma, multiple myeloma, leukemias, pediatric leukemia
    Friday: pregnancy and fertility, complications of pregnancy, sexual health, women’ gynecology cancers, pelvic organ prolapsed
    Saturday: weight management and obesity, bariatric surgery

    After that we’ll re-run the breast and prostate cancer programs that were on this past weekend and then move on to genetic conditions.

    I’d appreciate any guidance from people on this site.

    Regards,
    Andrew Schorr

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