I believe that Social Media Health sites have the power to make doctors less relevant, maybe even irrelevant.
Unless much of the medical profession embraces today's online revolution of patient education and redefines the patient-doctor relationship into a relationship of partners, many physicians are going to find themselves sitting on the sidelines.
Interesting thought isn't it? Here's my view.
Amid the health care debate that's been playing out on TV, a quiet revolution has been going on across the internet: patients are turning to each other for medical advice and care, and at only the cost of an internet subscription.
Social media sites, not the doctor's office, are growing "go-to destinations" to gather health information, share and compare tips and treatments, trade knowledge and experiences, gain new insights, take advantage of others' hard-won wisdom and encourage and support others.
Amy Tenderich, a manager of the largest and most active diabetes social media site DiabeticConnect.com says "The growth has been... well, kind of mind-blowing to be honest." DiabeticConnect has over 150,000 registered members from the US and 30 other countries. Monthly traffic exceeds one million unique visitors.
The questions I'm asking are:
What do patients get out of social media and is it making our physicians increasingly irrelevant?
What does this trend of increasingly educated patients mean for the doctor-patient relationship?
How can doctors make themselves more relevant to a growing number of educated health care consumers?
Social media sites offer easy and immediate access to information and support
Last week, Hope Warshaw, a diabetes educator and dietitian with nearly 30 years experience identified seven top diabetes social media sites and what patients get from them. In her blog, "Top Seven Diabetes Blogs/Social Networking Sites," she said, "Beyond staying on the cusp of what's happening in diabetes care, these social networking venues connect you with others with diabetes to help you get the support you need and give the support you've got to offer... all at your fingertips online."
Warshaw's Top SitesA few weeks ago I participated in an educational forum, Diabetes Bloggers Week, and wrote about it here. It was an inspired event created by a diabetes patient blogger, Karen, and 142 diabetes bloggers rushed to participate too. As Warshaw said, to connect with others and get and give the support they had to offer.
Then there's the "Me" Appeal of social media. Many sites serve our desire to hook-up with people very much like ourselves.
Skimming diabetes-only sites I found:If you're looking for your community, there's an overview of 25 social media health sites at Nursingassistantguides.com. Their top 4 are:
- estudiabetes.org - serves the Spanish speaking community
- Juvenation - for patients with type 1 diabetes
- Fit4D.com - specializes in exercise and nutrition coaching
- dLife Community.com - an extension of the dLife TV program
- Divabetic.org - offers education and outreach through fun activities for the woman of the house
- DiabeticRockstar.com - appeals to a hip, younger set while serving charitable goals
- Healthranker- Users are encouraged to submit health news
- OrganizedWisdom - Innovative in health care, users can become guides and make money helping others find information
- PeoplesMD - You can bookmark and share your favorite articles, blogs and web sites
- Trusera- Find and share your health story
I think Alliance Health Network host of DiabeticConnect sums it up pretty well--what most draws visitors to social media health sites is: 1) The sharing of a story, 2) the discovery of a new treatment and 3) the relationships formed between you and someone like yourself.
Some sites actually further medical research
PatientsLikeMe not only serves as a community center, but also as a repository of patients' own reporting and analysis of their condition, symptoms, medicines and treatment plans. Through patient posts and discussions a goldmine of evidence-based medicine is being banked across 11 different illnesses including Epilepsy, ALS, Depression, Parkinson's, Multiple Sclerosis and Organ Transplants.
Lori Scanlon, Marketing & Communications Director, says what has attracted over 67,000 patient members and doubled PatientsLikeMe membership each year is patients' urge to understand their disease better, and by comparing their experience to others' put it in some context. Members also include caregivers, practitioners and researchers.
Founded by three passionate MIT engineers, for whom ALS (Lou Gehrig's disease) was personal, the site was established to capture and share invaluable information among patients living with a life-changing illness and for healthcare professionals, pharmaceutical and medical device companies to improve the quality of patients' lives by having information they could only dream of.
This virtual revolution seems to be the tail wagging the dog. While researchers typically initiate gathering research and then report on it, now patients, facilitated by a social media site, are contributing to medical science.
Simply, it is no wonder why health social media sites are flourishing. Particularly since when we feel at our most vulnerable--with a health problem--what we most desire is support. We begin to heal when someone else feels and understands our pain.
When you live with a chronic illness and go on a social media site fellow patients understand a rotten day because they have them. And they will not judge or accost you for doing less than your best.
Compare that to how supported you feel during your 15 fairly impersonal minutes with your doctor.
Big Premise: As a result of our dipping into social media sites patients are changing
Those who use social media are no longer uninformed consumers of health care. They are no longer looking up in childlike awe to white-coated physicians. No, patients are increasingly better educated about their conditions, available medicines and treatment options. And educated patients want to be treated as partners in their care, and they want to feel whoever is behind that white coat sees them.
Big Question: So where does that leave physicians and can social media help doctors increase their relevance?
One can argue that social media is making doctors less relevant. But one can also argue that they can increase their relevance by providing what social media sites cannot.
Shortfalls of some social media sitesPatient being seen by physicians in a traditional face-to-face setting already overcomes this entire list of site shortfalls.
- May have patient-experts, but not medical experts
- No holistic intake of your overall, and secondary, conditions
- Poorly designed site, difficult to navigate and pull pertinent information
- Too many opinions that creates confusion
- Advertisements are often for untested products
- You are site-seen, but sight-unseen. Inability to read your physical state and body language
Take advantage of the new, rising patient-expert
While physicians do not have the time to keep themselves up-to-date on every disease and condition, they can actually take advantage of their patients who are becoming knowledgeable on their specific condition. Patients sharing what they are learning from social media sites offers doctors an opportunity to be educated by their patients.
If physicians view these patients as banks of knowledge, rather than as a threat, health social media sites can indirectly offer benefit to many medical professionals.
But for this to happen the nature of the relationship between doctor and patient must change.
Impart Medical Expertise Differently: Move from "tell and instruct" to "explore and partner"
Assuming that a patient may already have some knowledge about his or her condition from searching the internet, at the beginning of a visit physicians can adopt a respectful regard for their patient's knowledge and explore what he or she already knows. Physicians can then clarify any confusion, help patients better understand what they've read and heard and discuss together available options for treatment.
While the traditional, authoritative "white coat" stance will still work with some patients, it will also turn off a growing number of educated patients, particularly those with chronic illness.
Seeing Patients as people provides more benefit for both patients and physicians
Social media fulfills a very basic human need for relationship, encouragement and support. Health care providers who pay more attention to this need will go further toward building trust and rapport during an office visit. Unfortunately, with all the constraints on doctors, while they are so busy treating our illnesses, some have forgotten that they are also treating the people who have them.
Even though office visits are short, merely looking a patient in the eye for a few seconds lowers patients' anxiety. As does speaking in a kind tone of voice. Providers who show more of their own humanity and take a deeper interest in their patients enhance the "relationship" and will make the visit a better experience for both provider and patient. One of the biggest complaints I hear from fellow patients about their doctors, particularly specialists, is how cold and clinical they are.
Seeing "relationship" as an aspect of care heightens the effectiveness of the visit. It creates a more relaxed atmosphere where patients talk more freely about their aches, pains and life. This helps patients reveal things they might not otherwise say which then helps physicians make better diagnoses and design more effective treatment plans.
Further, medical experts will benefit if they approach their patients as co-experts and equals. After all, patients are experts on their body, their lives and their world.
However, the skills needed for such a relationship of equals are hardly taught in medical schools. Kaiser Permanente, one of the nation's largest not-for-profit health providers headquartered in California, recognizes that physicians need to add such "relationship" skills to their repertoire.
In the mid 1990's, Kaiser Permanente pilot-tested and continues today to train physicians on a communication framework they developed, called The Four Habits Model. In brief, the model trains physicians on four behaviors that can help them, during different stages of the office visit, gather valuable information and insight to make more accurate diagnoses, develop more effective treatment plans and develop a fruitful patient-doctor relationship. I will be writing more about this soon.
The unstoppable rise of social media sites
Social media isn't going away. Alliance Health Networks, the host of DiabeticConnect, also hosts several other sites including SleepConnect and ArthritisConnect and have more sites in the works.
Amy Tenderich told me she's working on a project for California HealthCare Foundation that examines patients' use of health social media. Many pharmaceutical companies recognize the importance of social media and are exploring how they can better connect to patients. Roche is about to hold their second annual social media summit to have an open exchange of ideas with diabetes bloggers on how to enter the arena wisely.
What started as a revolution in the virtual world, patients getting better educated, is now creating a face-to-face opportunity in doctor's offices. So let's hope that we will all soon benefit from two flourishing domains: social media sites and health care providers who are filling the gap that sites leave and leveraging their benefits right into their medical bags.
So, am I crackers? Or has your relationship changed with your doctor as a result of being a more educated patient? Do you visit social media health sites and if so, what are your favorites? Share it here with me and let other readers know.
Follow Riva Greenberg on Twitter: www.twitter.com/diabetesmyths
Will Aguila, M.D.: Don't Let Your (Facebook) Friends See You Sweat
Bernie Siegel, M.D.: The Power of Words: Revising the Doctor-Patient Relationship
The medical community wants to accelerate the flow of knowledge to patients and Web 2.0 media companies have become enablers of that goal. Healthetreatment.com is a new kind of health website that collects information directly from consumers. The information is captured and stored anonymously, but statistics are presented in aggregate to visitors of the website so that they can be better informed about health issues. Healthetreatment captures demographic information as part of the survey as well, so that outcomes can be tracked by gender, age and geographic location.
Healthetreatment.com’s Patient Perspective survey aggregates results from tens, hundreds and thousands of people who have similar health experiences to offer the most comprehensive view of living with a particular condition and the relative merits of a wide variety of treatments. I like that as a person living with ulcerative colitis, I can view the site to see how I'm doing in terms of symptoms and treatments versus others like me.
I'm a psychologist, specializing in trauma. Collaboration is really the only way to work with trauma survivors. If you have had, in the course of a traumatizing experience, your power trampled and ignored, then an expert-patient relationship, with the power residing in the expert or therapist, is generally retraumatizing and works against healing. Collaboration and privileging the client's experience is the only sensible treatment.
Health care workers are our guides, yes. And we can be helpful sources of info for them. When we can give them insights about what it's like to live with our conditions and the bits of info that we come across that they might look into, they have the background of their education and experience to use, along with those insights, to be better guides for us.
Yes, I've had doctors and nurses who didn't see the caregiver-patient relationship this way, and it was scary and frustrating to be there. In those situations, it was what I'd learned online and the support of others online that carried me on until I could find good care from medical folks who were good guides and could actually help me keep at the peak of my health.
I think the most important thing to remember is that social media is changing the landscape of healthcare tools. Historically, we have been reliant on a model of pharma to doctors, doctors to patients. Social media changes that model and has done so in rapid time and people are just catching up trying to figure out how this works and how to effectively use it.
There will be no time that patients will not need doctors, but this new medium gives patients and doctors the ability become each others advocate, if done well! Pharma and doctors need to join the conversation online, so can understand the issues and boundaries that keep us informed, healthy and safe!
I wrote a response to your blog: http://www.healthcentral.com/diabetes/c/9993/113715/relevance-doctors
You may want to check out this presentation from the DTC conference in DC this year on the demographic of Empowered Pt: http://www.healthcentral.com/about/the-empowered-patient/
These statistics should have been used as resource for use in your blog.
Riva, I think this blog was great because the comments that have been left will help open more minds to inclusion, not exclusion!
You are absolutely right! Docs learn medicine from research and more importantly each other, and, if they are listening, from their patients! :)
A new and as yet unproven treatment appears. If your doctor agreed to go along with it - you'd sue them at the drop of a hat if anything went wrong. Since doctors can't just do anything they feel like, or they'd lose their license, you feel they're standing in your way.
If you feel you've examined the evidence, the pros and cons, the risks and benefits, if you've analyzed it all and concluded that it will be good for you - by all means, go for it. You're an adult.
I can't help noticing that you regard doctors not as trusted experts - but as a rubber stamp. Why even bother going to another doctor, in this case it would have to be a surgeon. Can't you just do it yourself? What's vascular surgery? Nothing to it. Doctors are irrelevant, right? Or does that not apply to surgeons?
And if you get a doctor to do what you want - an unproven, untested procedure, and something goes wrong - you will agree that you have no right to sue them. Correct?
Doctors, especially family practice doctors, know that they are regarded by some patients as no more than a rubber stamp.
Again, I understand the desperation. I wish you all the best and hope things
Are we responding to the same article?
I have no doubt you've had unpleasant experiences with doctors. I think support groups are great. I think the internet is a wonderful medium to connect with others and learn from them.
If doctors were less constrained by excessive rules and regulations, less under attack by the threat of frivolous malpractice, less badgered every second by nonsense ('doctor, sign these meaningless 10 bureaucratic forms this instant'...and this one...and this one...), they'd have more time and more peace of mind to give you more of what you feel is lacking.
This article was not about the positive aspects of patient to patient communication. It was an attack on doctors. And to that I can say: be careful what you wish for. There might come a point where no one will want to devote their life to this career if this is the thanks they get.
Physicians are leaving medicine in droves. They are very unhappy. Who will be there to take care of you? Of all of us? If you think I'm exaggerating, that's because you don't know how many doctors really feel.
As someone living with a chronic condition I have had more than my fair share of bad experiences with medical professionals. I think that it would serve everybody involved to not feel threatened by all of the patient to patient interaction that happens these days. We're not looking to do anything but help ourselves cope with things that are hard to live with, and connecting with others who are coping with similar things.
All we're looking for is some real world experiences, rather than lawsuit safe PR talk about things. Does that make sense?
They should explore this with patients and aid patients where they may have information yet not know what it all means. Also, social media is telling us that patients crave support and understanding. Physicians who understand this have always attracted and kept loyal patients.
Physicians who've forgotten this would become even more effective by letting more of their humanity and compassionate into the office visit. I can't think of one patient who wouldn't appreciate this. Not only does it serve patients to feel understood and truly cared for, it also serves physicians. It creates an environment of support, that engenders trust and elicits more vital information from patients that can helps physicians make more evience-based diagnoses and treatment plans. riva
It allows people to seek advice especially of an non urgent nature, when perhaps clinics are closed etc...
Doctors/MD's/Nurses simply do not understand, however "US" the patient do not expect that from our Doctors. I think it is silly to think that professional medical advice will be replaced by Social Media sites.
In my opinion, Medical professionals should be embracing the technology surrounding them to learn about their patients, learn about the conditions/diseases that they treat.
They could heavens forbid actually communicate better with their patients.
On that said note I'm off this week end to meet with Medtronic in Switzerland, to talk about the aforementioned topics. http://diabetesinspain.com/featured/the-1st-annual-medtronic-diabetes-internet-forum/
I had a long post written out, but what's the point...
All I'll say is that I set up a web-site to give laypeople what they can't get from the Net - real, unbiased info about psychiatry. Not regurgitation of Pharma's latest ad campaign.
And I help physicians with burnout. If you want to know why physicians have burnout, look no further than this article.
Doctors like educated patients. Communication is the essence of my specialty in particular and part of every doctors job. When you take a patient to surgery in the middle of the night, you communicate with them, or their family if they're unconscious. And you communicate afterwards. Seriously, your post is beyond the pall.
Doctors also like to be respected and appreciated. Just like any other human being. I respect the electrician. No amount of googling about electricity will make me a co-expert with him. Yet you do not respect doctors.
-pacificpsych
http://www.pacificpsych.com