Editor’s Note: Matt Katz, M.D., is a member of the External Advisory Board for the Mayo Clinic Center for Social Media.
I’ve been a social media enthusiast for some time and see great potential for communication technologies to improve health and medicine. As a doctor, I’ve begun to explore how to use it professionally. But after witnessing enough scandals over the last year or so, I have reluctantly started to consider whether social media may do as much harm as good for our health.
Social media is not going away, and it is changing how we interact. I started out researching the topic with plans to write a review article. But several nagging questions arose with these technologies related to healthcare:
- Are privacy violations online detrimental to our health?
- Do increasingly sophisticated marketing unduly influence health-related decision-making?
- Do hospitals providing social media resources balance patient benefit with self-interest?
- By lowering the barriers to sharing, are some unhealthy practices or opinions making it harder for providers to help patients?
- Why are physicians and other healthcare providers less involved online, where people are increasingly looking for answers about health?
My purpose in raising these questions is to avoid disastrous use of new technologies we’re only beginning to understand – first, do no harm. As we become more interconnected and our health is affected by online activity, the potential for harm may become scalable and a potentially avoidable Black Swan may emerge. By discussing what we don’t know, I hope to make the transition into digital medicine less harmful for both patients, clinicians, and others in healthcare.
I do not expect to find definitive answers, but I do want to explore these topics as serious issues and try to develop working solutions to further tweak. Each question deserves its own discussion, and I plan to do so in future posts. If you have others you want to share, or you want to add to mine, let me know and we can add them to my list. Good questions are the best starting point for dealing with uncertainty.
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Great questions! It is about time we had a frank and open discussion on this important topic, for as you say, social media isn’t going away. I will watch with interest to see how this conversation evolves.
Thanks for asking these questions! I hope it starts a good discussion.
Our blog sometimes touches on medical issues. While we love interaction, I sometimes worry that our site gives credibility to people who assume that an alternative treatment worked for them, so it will work for everybody.
I have the same concerns, JoLynne. Because I frequently write about Big Pharma’s growing influence on ‘marketing-based medicine’, many anti-doctor groups (e.g. Jenny McCarthy’s vaccine opponents) somehow see me as a champion for their cause – which I am not. There’s a very fine line between welcoming public input and becoming a destination link for extremists.
sm is a good way not bed.
Thank you for your comments. Matie, I agree social media isn’t going away. I do think some enthusiasts may miss certain problems because of the empowering aspects it has for many.
Part of my writing is because of your point, JoLynne. We should be able to find alternatives to ‘standard’ medicine, but so much depends upon balance and care for each person’s needs. Not easy, but worth trying to sort out.
I am thrilled to see this post: This summer on our learning community about palliative care, we are discussing the role of sm in healthcare (hcsm). Your questions are some I hope our community will also address.
I heard someone once explain that they use a guide to share stories on SM: if it isn’t allowed in the elevator, then it’s a no online, similarly to cocktail parties, etc. One particular challenge is regarding rare illnesses or conditions – if a physician’s identity is known, and they write a case discussion – taking care to omit all personal data about the patient, but including a rare medical condition, the patient or their family may recognize the identity.
One question I raise is: how different can this form of communication be from case reports in major journals?
Thanks Suzana for contributing. I agree with the issue of privacy, which I consider a critical factor from the standpoint of the physician or other healthcare professional. And I agree about the concern regarding case reports. I think this warrants a post unto itself.
SA IS A LIFE SAVER, IT SAVED MY DAUGHTERS LIFE!, and is still helping to keep her living as best a life as possible.
Ashleigh Botha, from Port Elizabeth, South Africa, became ill at 11, after 4 years of constant tests, a Neurologist suggested she be tested for Fibromuscular Dysplasia. This was confirmed, after her 7th renal artery angioplasty, and a self medicating stent had been inserted into her renal artery. We were told by doctors they could not cure it or prevent it from spreading through her arteries, and there was no treatment available, as it was a rare disease and South African doctors had never before seen it and knew nothing about the disease..
My son immediately started “Ashleigh Botha Support and Prayer Group” on Facebook. Within hours we were contacted by Kari Ulrich, an FMD sufferer from USA, who was also a trauma sister, and on the FMD Board. Since that moment, Kari became Ashleigh’s life line and still is today.
There was no information on FMD in SA, and Kari explained everything about the disease to us, answered all our questions, and immediately started contacting doctors in USA who treated FMD, to find the best help for Ashleigh. Kari and I kept in contact via Facebook as well as email. She put us in contact with the FMD Unit at Cleveland Clinic, Ohio, and helped make all the arrangements for Ashleigh and I to get appointments with the correct doctors.
Our South African medical aid refused to assist us, as FMD is not on their data base of rare diseases, and she could not be cured. While we started fund raising here in S.A, Kari was fundraising in America.
Sadly Kari was asked to resign from the FMD Board as she was helping our family too much!!
With Kari’s help, all through SM, we were able to take Ashleigh to the Cleveland Clinic in June 2009. It was discovered that Ashleigh had a rare form of Intimal FMD, which is far more progressive and aggressive than FMD, and had to have a renal artery aorta bypass immediately as the stent had been crushed by her artery within 3 months of being inserted. Cleveland Clinic doctors referred to Ashleigh as a most unusual and complicated case. Kari travelled across America twice to be with Ashleigh, and support her.
Kari and Ashleigh have kept in contact via SM, since then, and Kari has advised and helped with every problem Ashleigh has encountered. Ashleigh needs to return to Cleveland Clinic very urgently to have her mesenteric artery bypassed and repairs to her aorta where her mesenteric and celiac arteries have the same origin and come off the aorta too low down. She is also needing her previous renal artery bypass attended to as this dilated to 4 times its original size within 10 months.
Our Medical Aid will still not assist us and with the help of Kari and SM, we are fundraising madly to get the finances to pay for Ashleigh’s surgery. Through SM we have managed to meet incredible people who have opened their hearts to Ashleigh, and I am using the info from SM to try and motivate our medical aid to assist with Ashleigh’s health care, as she will have to return to Cleveland Clinic regularly to have diseased arteries bypassed, and there are no doctors or facilities In South Africa for this to be done.
COLLEEN BOTHA, Port Elizabeth, South Africa
Dear Colleen:
Social media has has clearly been a great support to you and Ashleigh, for whom it has already had lifesaving benefits. I’m not an expert on this topic, and I do hope you’re also in touch with her doctors at Cleveland Clinic, who may know of resources to help you as well either for funding to return or other experts closer to you.
I know Kari from online communication and she’s wonderful, clearly an excellent advocate for your daughter. I’m sorry to hear about the effects it’s had for her, but this is partly why I want to discuss these issues. I face similar potential issues, whether it’s as a doctor or as a volunteer of a professional society. There has to be ways we can learn to use social media to help people like your daughter, and I find it both perplexing and frustrating.
Thank you for sharing, and I truly hope that you succeed in finding Ashleigh the care she needs.
Thank you for your kind reply Matthew. The Cleveland Clinic doctors have been more than fantastic and understanding to us. We are in constant contact by email, and they advise what tests Ashleigh needs, and I keep them updated with the results as well as her blood pressure readings. Her doctors are very understanding about our financial situation, but they work for the Cleveland Clinic, who demands 100% payment up front, and are unable to assist in other ways. Thank you for your concern, and with the help of SM, I will continue my fight to give Ashleigh the best life possible. Thank you.
As a parent, I fully understand your desire to find any way to bring your daughter back to her doctors for help. I wish both you and Ashleigh the easiest, swiftest path to get the care she needs.
What about texting with physicians? Would you consider this a social media? I love to be able to have direct contact with my doctor when I need something, but I imagine most aren’t willing to give out that information.
Hi Katherine:
Texts to physicians are definitely a form of communication, but there may be privacy concerns about SMS, definitely the case with Twitter’s direct messages. Worth asking but email is probably more reliable and secure at this point. Even that, though may not be as secure for your privacy as a telephone call.
Many people do want to communicate with their doctors, and it’s variable about how receptive they may be to how best to reach them. Responsiveness among doctors is very important, but bias, experience and stylistic difference lead to variations.
Dr. Matthew Katz poses a critically important question that is both timely and worthy of discussion amongst all people – especially health care providers.
I have worked in health care for the last 17 years and have witnessed both the benefits and detriments of digital medicine and its impact on healthcare. Over the last few years the evolution and exponential growth of social media have left me perplexed by seemingly harmful decisions made by patients regarding their health and well being based on unsubstantiated data published on unaccountable social media sites.
The impact that social media has had and continues to have with regards to shaping and forming public opinion is confounding. These effects present a serious public health and welfare question when decisions regarding your health are made based on inconclusive or unsupported data found on a blog or similar social media site. The disastrous effects are compounded when a few unvalidated sources of information are able to virally spread their message to the masses without challenge or disclaimers inevitably resulting in representing its claims as the defacto truth- however innocent this may result.
The trend in health care decision making amongst most members of the public will undoubtedly continue to turn to the internet and seek out social media sites dealing with your particular disease or health care issue. The problem lies with the fact that the publishers and authors of these sites are not ethically bound to the Hippocratic Oath or other ethical considerations that must be taken in to account by health-care practitioners. How do unsuspecting members of the public faced with difficult decisions regarding health care for themselves or their family members distinguish between what is considered reliable and validated data versus unsubstantiated and often times bogus data?
The questions Dr. Katz presents scratch at the surface of a very fundamentally important question to all providers of healthcare and society at large. This digital fork in the road leaves me wondering what public safeguards need to be put in place so that we can all continue to reap the benefits that technological advances have had in healthcare decision making but continue to abide by the age old Hippocratic Oath and notion of ” first do no harm.”
As responsible and ethical health-care practitioners can we remain indifferent about the matter or do we have an obligation to speak out and address this matter in a more robust and proactive manner? Dr. Katz is on the right track with the questions he poses and I am curious to see if this very important issue that impacts everyone in society will gain the momentum necessary to propel it in to the public spotlight and garner the support necessary to warrant necessary changes in what appears to be a harmful system of decision making.
Thank you Dr. Katz for presenting the questions – I look forward to following this post and seeing what your next post will address.
Regards,
D. Jacob
Dan:
You’re right, as usual. There are some serious possible hurdles to making social media an effective communication tool in healthcare, and it may pose different but real challenges for both patients and providers. But I believe there are ways to make it both helpful and safe. As we’ve both said, better information is important. We’ll definitely get into that, as well as the value of medical ethics in considering the best path forward.
Full disclosure: Dan and I work together in Lowell, Mass. and worked together years ago at Memorial Sloan-Kettering in New York. We have very active conversations about cancer care but also healthcare and society at large. He’s a great colleague as radiation therapist and sharp lawyer to boot — which makes for robust conversations at work.
While we often agree, it’s always fun to really reconsider positions as better arguments show up. What Dan doesn’t know (yet!) is that I will question the value of some aspects of the Hippocratic Oath in future posts, particularly given the benefits that social media brings to the table. We can discuss that at lunch, Dan
Matthew and Dan-
I think the common misconception around social media is that it’s something entirely new, a phenomenon which we’re totally unprepared for. To me, it’s just another medium, and media is inherently social. I think what’s changed is the degree to which it is made personal.
I actually used to live in Lowell, too! I’m considering moving back next year, as I really enjoyed the community there. While I was in school there, I was involved in media as the GM at the college/community radio station. It gave me a good perspective on the impact the media, social or otherwise, can have in a community. Lowell has the 2nd largest Cambodian population in the country, and the radio station was an important resource for the population there for news and health literacy. There were lots of members from the Cambodian Health community involved, and eventually we began webcasting their shows, and it became immensely popular in Lowell as well as Cambodia. So, my experience with social media is as an extension of community media, and I think it’s a concept we should embrace more. It’s important for social media to be community, not individually, based to have real impacts.
Nate, thanks for your comment. I agree that it’s not ‘new’ but is more more pervasive, and potentially invasive. Very cool about the Lowell connection. It’s a great city with a rich history and diverse community. Do let me know if you’re back to visit!
Finally getting around to reading your posts and following the conversation that emerges.
From a sociological perspective, the only thing new about social media is the way this technology (these technologies?)speed up — everything.
My hunch is that disconnects, “scandals,” and other community-related phenomena emerge in a predictable sequence but more quickly and thus more visibly. Just a hunch and hoping some enterprising sociologist at an academic institution collects the data to support or nix it.
Thanks, Meredith. I agree that social media accelerates what we do and makes it more transparent. I do think, however, that it may be more transmissible to others…viral, for good or bad. We definitely need more data.
I truly believe that knowledge is power. It is AWE inspiring for me to think how much knowledge my Mayo Clinic care team has, and would they be more eager to share this knowledge with me if it were through a screen and not in person or on the phone. It would be less PERSONal, and then maybe less real? No Dramatics, No feelings, just text and facts. When I am sitting in my Doctor’s office, I want face to face, compassion and care. But when I am at the computer, I want clinical responses, details with visual aids and data.
My most recent Media swim came from trying to amas as much information about my pancreatic lesion that was discovered some months ago. Not knowing anything about the pancreas, just that I had one, I would go home after the Doctor’s appointment and “Google” pancreas+cyst+endoscopicultrasound+distal pancreactomy… any phrasable search question I could decipher from my notes that I scribbled down during my appointment. My search results would have Social Media links, blogs, tweets all sorts of somewhat but not exactly related information that was just a left click away. My Mayo Docs are wonderfully amazing, but I think at times they forget that as a patient, I do not have a network of Clinicians, Specialist, Researchers, Surgeons, Labs, Radiologists, at my command. I have 15 minutes or so to get all my questions asked and hope I don’t sound too stupid or need any extra clarification. (by the way, how many CT scans can you have in a 3 month period before you glow in the dark? Is 10 too many? I am sure I can find out somewhere on the www. HeHe)
If my Doctor answered that question on a Social Media site, would I be satisfied with her response? For me it would be a doorway to pursue more information and prepare a dialoge to have with her at our next appointment. It is my responsiblity to empower myself. To gain the knowledge I need to make an informed choice about my care. Knowledge is power.
About Privacy…? Do you know who my surgeon is by what I wrote above. If you do, tell her I said Thanks for the extra TLC.
Thank you for a good article. To me Facebook tries to mix both public and private sharing and I am not sure that mix ever works – the privacy controls have to get ever more complex with the result that people inevitably share more publicly than they would normally be prepared to do. I believe that either a network should be fully open (e.g. Twitter) or fully private.
This is one of the driving reasons why I founded DAD, http://www.dadapp.com, a 100% private social network, which also works for sharing amongst your own computers and sharing at home – as we say: more flexible than dropbox, simpler than windows networking and more private than Facebook.
Magnificent issues altogether, you simply gained a new reader. What may you suggest about your publish that you made some days in the past? Any certain?