The Internet and other communication technologies, such as cell phones, have had a profound influence on how we live every day. What is the impact on our health care?
Some doctors shudder when a patient comes into the office with an armful of print-outs from the Internet, but others have learned how to turn the irresistible temptation to Google to their patients’ benefit. Searching the Web for health information is a very common activity. We hear from two different doctor-patient pairs about their use of modern technology to improve their communication. Here are some useful links:
ACOR.org, Association of Cancer Online Resources, an organization of listservs for people with rare cancers

CaringBridge.com
, a site that lets family and friends stay updated on a patient’s progress
e-Patients.net, where the white paper: e-Patients (How They Can Help Us Heal Health Care) is found, along with many other interesting entries

participatorymedicine.org
, home of the Society for Participatory Medicine
Guests: Mitchell Cook is a senior at Ravenscroft School in Raleigh, NC. He diagnosed himself through an online search and has been a patient of Dr. Duncan Phillips.
Richard Davies deBronkart, Jr., known as e-Patient Dave, is a cancer patient and activist for healthcare transformation through participatory medicine. He is co-chairman of the board of The Society for Participatory Medicine. His book is Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (And What Healthcare Can Learn From It). His website is http://epatientdave.com/.
Mike Dodson is the father of one of Dr. Phillips’ patients.
Danny Sands, MD, MPH is a director of Cisco’s IBSG Healthcare Practice and Cisco’s director of medical informatics. He is also an assistant clinical professor of medicine at Harvard Medical School. He is a founder and is president of The Society of Participatory Medicine.
Susannah Fox is Associate Director for Digital Strategy at the Pew Internet and American Life Project. She studies the cultural shifts taking place at the intersection of technology and health care. The photo is of Susannah Fox.
J. Duncan Phillips, MD, is Surgeon-in-Chief and Director of Pediatric Surgery for WakeMed Children’s Hospital in Raleigh, NC.
The podcast of this program will be available the Monday after the broadcast date. Podcasts can be downloaded for free or you can stream the show from this site for six weeks after the date of broadcast. After that time has passed, digital downloads are available for $2.99. CDs may be purchased at any time after broadcast for $9.99.

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  1. JP
    Reply

    Great show.
    Bottom line is that Doctor’s and Healthcare companies do not make any money answering emails, no matter how efficient or great for the patient. As a result, it will not happen in most situations. I commend the Dr. that does use this approach.

  2. MJB
    Reply

    Overall, I thought this show was very interesting. However, one very important piece missing was the fact that people can access the best of medical research, journal articles, etc. through databases accessible through one’s public library.
    With my library card I access the databases at home. I do all the medical research for myself and my family in this manner. Additionally, groups such as the American Diabetes Association allow online access through their websites to the general public to articles published in their journals. These are amazing resources. More education needs to be done to apprise the public of these resources and to assist the public to be critical consumers of the information available on the web.

  3. Cascadia
    Reply

    Joe – “can’t afford to sit at computer if not paid” that is the real key.. At places like Group health up to 50% of all patient encounters now happen remotely via email or telephone encounters.. That frees up more time so that you can have longer in person visits for people with chronic conditions.. They have a mobile app that lets people see their medical records, labs and connect to their care team via smart phones.. The difference? They like other leading docs at Mayo and Geisenger are on salary.
    The last thing most professional or ePatients want is for people to goggle search their problems and try to figure out the good from the sales pitches. Instead sophisticated doctors know we are going to do that anyhow and send people like epatient Dave (with stage 4 Kidney Cancer) to a community for support. In Dave’s case he scared himself as the result of a Google search. It was his doctor that knew about the best resources and his oncologist that knew about the best treatment. The online community backed them up and helped Dave feel more involved in his care and less anxious.. He didn’t find the treatment online though.
    SLS – the treatment he got at a leading Boston Hospital was Interleukin II at Beth Israel hospital. He now makes his living traveling the country telling his story and is easy to find via his company blog http://epatientdave.com/ or twitter epatientdave or of course via a search.

  4. SLF, AR
    Reply

    I got on ACOR.org, but the pages I was most interested in are under construction. I will try again, but was disappointed. However, what I want to know may not even be on there. There was a gentleman who called in who was diagnosed with Stage 4, kidney cancer. He mentioned a treatment that he had and I am very interested in knowing what it was, I believe it was something fairly new, LRT or LTR. I have a friend who was just diagnosed and I would like to pass this information along to her and her husband. He also mentioned a doctor, I think it was David McConnell, but not sure. I would really appreciate it if you could let me know. Thanks.

  5. S. L., M.D.
    Reply

    In response to your show on physicians using email, I am a practicing primary care physician, and unlike the surgeon you interviewed I am paid by the visit, not by the very expensive procedure that he performs. He is paid once for surgery, and all followup care is bundled into the first charge. It is to his financial advantage to do followup care electronically, so that office visit time can be offered to future paying patients.
    To suggest that all physicians should be offering free care over the Internet, does not make sense. It also does a disservice to the value of in-person evaluation of problems.
    I certainly do follow-up from visits electronically, but the example you gave, of a tertiary care surgeon at a referral center, does not acknowledge how medical care is delivered by anyone who is not a surgeon.
    I hope you will address this issue in future programs.

  6. R. U.
    Reply

    I am listening to your show about obtaining medical info via the internet. I have found that MD’s older than myself have ego issues with patients that attempt to assert any knowledge that does not come from the Dr. himself.
    Conversely I find that younger physicians tend to be more open to greater input from the patient. My current internist (He is Latino… if this has any correlation to the statistics your guest was mentioning) has actually sat in the exam room with me and Googled my symptoms for more info about what he suspected my problem was. I have more respect for him for doing this in front of me, and not taking the position that he knows all.

  7. G. P.
    Reply

    Bravo for calling out doctors in general for their unwillingness to use email to communicate. It drives me NUTS the way they avoid modern technology in their office administration.
    Why are they all such a bunch of Luddites?

  8. W., MD.
    Reply

    Dr’s are reluctant to accept pictures via e-mail to do diagnosis because of medical insurance and how to charge for their time.
    How do I bill a patient for the time I spend on line researching their problem?
    How do I charge for looking at photos and reading their E-mail remotely?
    Would this work if I’m in an HMO?
    Your Fan!!!

  9. JH
    Reply

    This show was interesting and thoughtful. One aspect that wasn’t covered was using YouTube to get information on medical procedures.
    I needed an MRI recently and was nervous about it. I went to Youtube and found some videos that showed the process and this allowed me to be better prepared for the procedure.
    I’ve also gone to Youtube during physical therapy so that my therapist could get better informed about what I wanted to do (roll my kayak), so that he could make recommendations about what exercises to try next.

  10. JCH, MD
    Reply

    The discussion was a good one in general. I encourage patients to search Google and actually refer them to certain websites. It’s easier now that some of the search engines rate the websites, although the rating is not always accurate.
    I do not have time to go through armfuls of papers copied from websites but I will make a note of the websites and look a lot of them up. For non-medical people, Google is a very good way to investigate medical illness in a lot of situations where a disease has defined symptoms. For medical professionals it is also a very useful tool to search for rare or complex diseases.
    I do not agree with Joe’s comment about doctors answering email and treating over the internet. It is often just not that simple to deal with a complicated case by looking at a few pictures and reading a few symptoms. If a patient has a simple laceration or surgical incision problem, it may be safe to deal with it by email but in more complex cases (like a patient with lymphoma,emphysema, heart trouble, diabetes and renal failure who has had a bone marrow transplant) an email of a picture of a rash or an enlarged lymph node or oral lesion with vague symptoms, is just too much to deal with by computer.
    Frankly, after just starting to deal with EMRs (electronic medical records) I think that the softwear is still not advanced enough to deal with medical care yet. I just do not have the time to sit at a computer and answer questions after working from 7:00 AM through 6:00 PM 4 or 5 days a week… especially I if cannot bill for my time, not to mention my slow typing skills.
    PEOPLE’S PHARMACY RESPONSE:
    Dear Dr. JCH,
    First, thanks for listening and taking time to comment. We’re pleased to learn that you encourage your patients to use the Internet to learn more about their health concerns.
    I will respond personally to your feedback, since you addressed your thoughts to me rather than to Terry. First, regarding email. The idea that patients should always communicate with a physician by telephone (or directly face-to-face in an office visit) seems inefficient. Trying to get through a typical phone tree at a large doctor’s office or clinic can be daunting. When you finally reach a receptionist you will almost inevitably be told that the doctor is seeing patients and will call back later. If you are fortunate, that means you might get a phone call that evening, but if you are not home that means phone tag. Now you have to start the whole process over again the next day. It may take many tries and several days before you actually get to talk with your doctor.
    Email seems so much more efficient if it is a simple question, such as could my symptoms be related to the new medication you just prescribed and if so, what should I do? For example, if you prescribe lisinopril for high blood pressure and three weeks later your patient develops a cough (common side effect of ACE inhibitors as you know), does the patient really need to come in to your office to get a new prescription for a different blood pressure medicine?
    Second, no one is suggesting treating serious health conditions over the Internet. Most states prevent that anyway by law. It would be irresponsible to suggest that anyone treat cancer or kidney failure over the Internet or by e-mail. That certainly was not proposed during this interview.
    More and more insurers are reimbursing physicians for “E-visits.” Common problems may be treated quite effectively through a secure portal. The Mayo Clinic has instituted such a program through its family practice secure site. Patients and physicians seem to be adapting to this concept quite successfully. You may find this article on E-Visits by John Bachman, MD, published in the Mayo Clinic Proceedings (Aug, 2010) of interest. Just paste into your browser:
    http://www.ncbi.nlm.nih.gov/pubmed/20516427
    Again, thanks very much for offering your thoughts about this controversial topic.
    Joe

  11. Bungalow Girl
    Reply

    I just caught the tailend of this show, was VERY intrigued, so immediately went to this webpage to learn more… I tried to click on the ACOR.org link you posted, but it does not work… Can you have someone check this and maybe repost a working link? Thanks for everything you two do!

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