The problem with social media and health

Humans have invented tools to solve problems for themselves since day one. We need to bang something into the ground. That rock over there will work. We need to communicate with one another over a distance. Hey, how about some smoke signals?

The social web is just another tool to solve our communication problems in addition to smoke signals and the telephone. It’s absolutely wonderful at spreading new ideas, new being the operative word.

The social web is also great at spreading meaningless drivel— when you woke up, what you ate, what you’re listening to, where you went for a drink, etc.. For many reasons, some of us still want to tell the world these things almost to justify our own existence as proof that, yes, we exist in the world, and yes, we do things. The social web, in order to function, requires users to engage in meaningless drivel. If Facebook was only for big, important ideas, well, it would be relatively empty. I consider myself kind of intelligent, and if a status update had to pass big important idea muster, my Facebook would be incredibly empty.

In order for social media to exist and function, it must engage users on a daily basis. And therein lies the problem with social media and health. But to understand this, we have to define health to users.

The first user group is the young, active person who maybe gets sick or injures themselves a few times a year. The definition of health to this user is “not having to think about it” until they get sick or hurt themselves. Sure, they may eat a healthy diet and exercise on a regular basis, but that’s just their normal lives. They do it because they enjoy it, not because they have to. This group has no significant daily health problems. They have a one-off transactional relationship with health and healthcare.

The second group is the young or old person who was recently diagnosed with a chronic illness that they will struggle with on a daily basis for the rest of their lives. Think the newly diagnosed asthmatic or diabetic. The definition of health to this user very much follows the grief process that occurs in our lives when we lose a loved one:

  • Denial and isolation
  • Anger
  • Bargaining
  • Depression
  • Acceptance

Just as the grief process takes about 6 months to play out, it takes about 6 months for people with new chronic illnesses to come to terms with it. After this 6 month period, it just becomes their version of normal, part of their routine, and their definition of health moves closer and closer to group number one— not having to think about it.

The third group are the chronically ill who are so chronically ill they must think about it almost every second of the day. This is the elderly woman in the last stages of heart failure or COPD. She’s carrying the oxygen tank and her life is severely limited. She typically already went through the grief process many years ago, and now, even though she’s super sick, it’s still her normal.

Alrighty, so how does social media fit into each group.

Group 1. Their definition of health is not having to think about it. They don’t have a problem nor do they need a tool, like social media, to solve a problem they don’t have. There is a very, very small subset of people who want to document their life according to their health— the quantified selfers. But this group is tiny because it’s just data geeks who are obsessed with data. They are people who truly believe data changes behavior. Data gets old after a while. After about a month, for those who are not obsessed, it becomes meaningless. That is, unless you have an obsession with data. And that is such a tiny fraction of people, there would be no point building a health social media platform for them. Good luck trying to build a viable business around that group.

Group 2. This is the “Hi I’m Bob, and I have diabetes” group. They have about six months where they absolutely need access to information and insight from others about what this new life means. They become obsessed with their health. Therefore, they have about six months of super intense learning, and they need to connect with good information and others who are in the same situation, hopefully via social media. Think PatientsLikeMe. But then the six month time period is up, they’ve figured it out, and their chronic illness they live with on a daily basis becomes their normal. At the end of 6 months, they go from “Hi, I’m Bob, and I have diabetes” to “Hi, I’m Bob and I’m just a normal guy.” These people need health social media for six months.  But good luck trying to build a viable business around that group.

Group 3. Their chronic illness has been normal for years and they’re just trying to find their moments of happiness in their lives— seeing the grandkids over the holidays for example. They have a big problem, but the social media for health tool doesn’t fix it. Granted, if they’re on Facebook, it’s super nice to get a message from their grandkids occasionally. But try building a viable business around this group. Facebook already did it.

Yes, health is influenced by social media. A diabetic can learn about a new lifehack from another diabetic on facebook. Yes, I, as a healthy person, can learn about Michael Pollan’s new book and start eating better. But I think it’s almost impossible to build a viable social media business that focuses on health. It’s the wrong tool for the problem at hand.

Jay Parkinson is a pediatrician and preventive medicine specialist and founder of The Future Well. He blogs at his self-titled site, Jay Parkinson + MD + MPH.

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  • http://twitter.com/researchgirlca Research Girl

    Like most things, it’s not quite that simple. I’ve been through group 2 twice, even though I’m fairly young, and yes, I had approximately 6-12 month periods where I combed the internet and libraries for information and coping strategies about my new conditions. But I’m in group 2.5 PLUS in group 0.
    Group 2.5: adults with long-standing disabilities or chronic conditions that won’t kill them, but may limit their lives somewhat or requires regular routine and self-management. Think – chronic pain, auto-immune diseases like RA, disabilities like spinal cord injury, or conditions like asthma. Patients in this group have their educational needs met, but especially when your condition is invisible, you are rare (or your demographic in that illness is rare) or you don’t have great access to specialized care, these patients seek out social media for peer support, coping strategies, questions, info on new trends and complications. It moves from a need for basic patient education to sophisticated self-management tips. Think – from PatientsLikeMe to ChronicBabe.
    Group 0: This is a generally young, very upwardly mobile, and usually well-educated crowd who views health as part of a daily routine: exercise, yoga, healthy eating, reading, etc.  All to serve the goal of being as up on health as possible – managing it like one might manage a career. This group is also fairly consumer-focused, viewing health as something you can invest money in. I’m one of this group to a certain extent, because my disability forces me to keep a close eye on the fine balance that is my life. This group might also include people going through NORMAL life changes like pregnancy or menopause and wnating to do so as healthily and safely as possible. These people are VORACIOUS users of the internet. These users swap stories and tips about how to do things as healthily as possible, they discuss trends and research, they advise each other about products, and through these discussions, there is community/peer support.
    The key here is that the things social media gives to health, to patients and to healthy people interested in prevention, are things we have not easily found ways to monetize – education and peer support. In the real world, patient education isn’t monetized either – brochures in doctor’s offices are almost always free, and though you can read some good books in the library or from a bookstore, the most important information comes from your doc or from research – neither of which generally follow a business model when they communicate this information to you. Peer support has almost never been monetized. AA, grief groups, etc. have never been for-profit. Why would social media be any different.

    When you say that social media is the wrong tool for the job, you should reconsider that perhaps the METHODS that use social media as a tool to achieve a certain end are the wrong methods to use if you want to make money.

    I find it really interesting that you went through your entire article about social media and health before you disclosed that it was the BUSINESS of using social media in health that you were really using as the measuring stick.

    You may not make much money from it, but FREE forms of social media including twitter, facebook, communities like ning, live journal and others, are doing just great at connecting people with health concerns, interests and conditions (doubt me? Look up how many groups about pregnancy, and about childhood obesity there are online and on facebook) with the information and community they seek. And making money for their advertisers and platforms at the same time.

    • http://twitter.com/klimaz klimaz

      If a social media channel would remain in place it needs to be sustained and that takes money. Whether we talk sustainability or business case some group of people need to see sufficient benefit that they will pay.  

      By making use of existing social media, health-related users become part of that business.  They are participating in an exchange. In most cases what you pay is information about yourself: your location, your network of friends, your opinions, your health status, your age, your interests, and so on. 

      • http://twitter.com/researchgirlca Research Girl

         …And with access to me – most successful social networks now run on advertising, which uses those demographics to tailor to my interests. I have no issue with this and neither do most people from what I can tell. I just think that profit is not the only metric when there are plaftorms that have alternative ways of making profit that do not greatly impact on the utility and usability of the social media or social network for the broad variety of health-related purposes. The profit motive is not significant enough to keep individuals from using social media for health – I see the profit motive as something that keeps institutions and businesses from opting in.

        However – in terms of the situation in canada, the metric is not about whether social media will make profit for your health related business (ie private practice, hospital, clinic, etc), it’s mostly (though not always) about whether social media is safe/private/accessible, and whether it improves patient care, public health, or the healthcare system in general. I could see that in independent practices (like GP clinics), an investment in staffing or time for social media use (not to mention strategy or platform technology) would have to show a monetary value. However, this doesn’t stop tons of physicians in private practice and hundreds of thousands of patients from using social media for all different reasons related to health. I just think this article should have a more accurate title: “The problem with MAKING MONEY THROUGH social media and health.”

  • http://www.facebook.com/profile.php?id=826734007 David Hanson

    I have been following several health websites for more than 10 years.  My first motivation, which continues, was to lose weight and age with good health.  My second motivation is to help my non-computer using spouse who has an autoimmune disease.  We have followed Dr. John McDougall’s low fat vegetarian diet since 1995 and have been reading the discussions on his website for many years (before he had his own website, he used Vegsource to provide discussion groups).   I have purchased his books — all used, though.  I have purchased a few of his DVD’s and CD’s.    My point is that there are people who have long term internal commitments to learn about their disease or health problem, and hopefully use that knowledge to help the problem.  I believe that we have been helped by what we have learned on the Internet —- I weigh the least that I have weighed for 43 years and my spouse has improved health which may be due to changes in diet (her doctor like many doctors has no idea how lifestyle changes can help with her autoimmune disease).

  • Chris OhMD

    This is a very good article. I’m all for SoMe for healthcare but I think people are getting too excited prematurely. As the article discussed there are many ways patients can use online tools but what differentiates healthcare from other industries is that at the end of the day a patient needs face-to-face with a physician in the office. Last time I checked an online tool cannot do a blood test for you. Sure, many companies are trying hard at this “wireless” tele-monitoring thing but you have to remember that the data still has to be reviewed by a physician, unless you plan to attend “Khan Academy” medical school and give yourself an “M.D.”. The the only way to have a viable SoMe model in the long run would be to integrate with an existing EMR-patient portal system as a tool for taking care of patients in between office visits.

  • http://twitter.com/MedSavingsDoc Stephen Meyers, MD

    Jay,

    I agree with all of your points.  They are the same obstacles we encounter with patient engagement/participation in the clinical setting.  An additional barrier is the breadth of healthcare.  Any single individual would be interested in only a tiny percentage of topics.

    There is an unmentioned common motivator that runs across all three demographics you discuss–today most everyone is concerned about cost.

    Rather than attempting to create yet another social network for people to keep up with, it makes sense to utilize the tools that people already use.

    I have recently built a complete set of health topic pages/boards on Twitter, Facebook, Google+ and Pinterest.  I post to each of them patient-centered articles and resources that help people understand their medical conditions, make better-informed decisions with their healthcare providers, and reduce their medical expenses along the way.  The idea is that by following the topics of interest on their preferred social network they will see helpful articles and resources that they otherwise would have missed.  The Facebook and Google+ pages in particular can also serve as discussion boards or communities for people to share tips and add to the conversation.

    Time will tell which topics garner the most interest.  Since you are a pediatrician, feel free to check out the pages pertaining to infant health and child health.

    The topic index can be found at: http://www.SmartMedSavings.com/chasm

    It is a young project, but I hope it will help to at least partially overcome some of the obstacles that you mention in your well-written article.

    Stephen Meyers, MD

  • http://twitter.com/the_anke Anke Holst

    It’s a shame when we have to look at everything from the starting point of ‘can we use this to make money’. How about starting from the point of ‘can we truly make a difference’ and go from there? I think social media can truly make a difference to our lives, but sadly it’s being killed by people who need it to make money for them. People who use social media without commercial motives will be leaving platforms as soon as they get commercial, try to monetise, get discovered by advertisers.. Circle of life, I guess.

  • Craig Koniver, MD

    Actually I think all three groups benefit from social media. But certainly it is all about perspective. Seen from the view of “building a business around” model, social media is not likely something one can monetize. But seen from the view of how can a physician and her patients and patients themselves connect with each other, then it is quite apparent why social media works well.

    The fact remains that patients do not feel connected to their doctors and to think that the office is the sole place for interaction is silly these days–most doctors provide 10 minutes to their patients per visit. 

    And while the social media arena cannot replace any face to face interaction and connection–it does provide a forum and meeting place for those interactions and connections to broaden and grow.

    No, social media and health certainly don’t mix if your only goal is financial profit. But for those of us (both physicians and patients) who want to connect with each other, then social media is a wonderful place to be!

  • http://twitter.com/TheLizArmy Liz X

    What about the third group, the chronically “ill,” who aren’t the old grandma-types: the 70,000 young-adults (18-40) currently living with cancer?

    We are taking advantage of social media to find each other and connect. We are using tools like Planet Cancer, sharing special hashtags like #bcsm (breast cancer social media) and #hcsm (health care social media), and connecting through I’m Too Young For This (a organization solely focused on advocacy for young adult cancer). 

  • http://www.bryantsstatisticalconsulting.com Donald Tex Bryant

    It would be interesting to know if there is any research on the effectiveness of Social Media in helping patients.  Is it any more advantageous than other avenues, such as medical blogs or sites such as WebMD?  I believe that social media sites may be very helpful in patient to patient communication, but because of HIPAA restrictions it seems much less effective for patient-physician interaction.  Granted some physicians may like the media and find it useful for sharing their insights, but I do not think it is a useful tool for most physicians in their interaction with patients.  A secure web portal for private exchanges would be much more useful, I believe. 

    I would welcome any feedback on resources of effective research on the topic.

  • http://twitter.com/SharronWilliam2 Sharron Williams2

    enjoy your post! Thanks for the in sight. I mainly work with the senior population.

  • Anonymous

    The observations here seem to be based on an incomplete understanding of what Social Media are and why hundreds of millions of people around the world sign up for them – I am sure what you ate this morning drivel will work for a few hundred thousand, may be a million but definitely not hundreds of millions! They are causing governments in Egypt to topple and Justice Department getting a million petitions in a few days asking them to investigate Treyvon Martin’s shooting in Florida! I am sure there are some pretty smart people in all those hundreds of millions of people that may be – just may be smart enough to recognize drivel when they see it! Facebook allows people to share and use a common web site that they don’t have to create, join selectively and keep themselves updated on what’s happening with their friends and family around the world! Twitter helps people with Multiple Myloma Cancer to keep up in real-time with information, articles, treatments, etc by following the Twitter Hash Tag #MultipleMyeloma. LinkedIn may help people developing applications in mobile health apps find each other for partnerships, employees, employers, business development associates and multiple interest groups to in Healthcare to share information, ask for information, receive it, etc.

  • http://www.HealthcareMarketingCOE.com/ Simon Sikorski MD

    Jay, you’re missing one point though:

    After 6 months on social media sites meant for patient-to-patient connections, and after 10,000 hours per every hour spent in a doctor’s office … that one person has the opportunity to become much more than just a “normal person”

    That person, if spurred to action by their newly found friends and doctors with whom they connected, is able to become a health activist and a hero for the thousands of others who are struggling to make ends meet.

    That person has the ability to become empowered and empower other people.

    That person can, if he/she so chooses, become an advocate for the doctors struggling with the internet and social media. That person can become influential in the patient-doctor interaction not just with their own interaction… but for thousands of others. They can pave the way for patient communities to proper…

    … and become prescribed by doctors to their patients.

    Please don’t forget that.

  • katerinahurd

    How would you categorize young disabled soldiers?  Are you endorsing a statistical definition of health?  Are you implying that a chronic health problem is the accumulation of disorders that are out of the norm?

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