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 Sites
A 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:
- 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
If you're looking for your community, there's an overview of 25 social media health sites at Nursingassistantguides.com. Their top 4 are:
- 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 sites
- 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
Patient being seen by physicians in a traditional face-to-face setting already overcomes this entire list of site shortfalls.
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.
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