Social Media & Health Care Conference

Last Tuesday (Nov, 3, 2009) I attended a conference about “Social Media & Health Care” held here in New Brunswick, NJ. The participants were predominantly (not exclusively) employees from the Johnson & Johnson umbrella of companies but from various departments (marketing, communication, product development, legal, financial etc.). The conference was focused on how companies are engaging online, how they can do more and better in the future, and how they can take advantage of this new communication opportunity in “good taste”.

The speeches began with Ray Jordon, Corporate Vice President of Public Affairs and Corporate Communication at J&J who listed some vital statistics:

• 61 % of Americans search for health information online
• 60 % of those seek information from people like themselves (lay people) - not professionals
• 56 % of those that searched online changed their medical approach due to their research and
• 53 % of those that searched would ask their doctors about information they found online or would seek a second opinion.
  

He went on to discuss how this change in “corporate credibility” was an opportunity worth addressing. To help companies better understand the challenges when attempting to communicate to the masses on an individual level (he was referring to the fragmentation of users online) several guest speakers were brought to share their insight. Two of which are “Patient Bloggers”, meaning regular people that host their own blog (sometimes with a forum), that talks about living life with their condition.

Kerri Morrone Sparling, has Type 1 Diabetes and writes on SixUntilMe.com,

and Jenni Prokopy has chronic pain (and a stream of other conditions) and writes on ChronicBabe.com.

Both expressed a desire for more credible medical sources to be available online. They were not opposed to the involvement of medical companies in online education; they simply stated that it “needs to be done the right way”.

Both bloggers had over 10,000 viewers monthly and complained that many of their readers use Google to search for information, although it has been proven that often the first search results are often not from medically reliable sources. They both experienced companies getting involved in their blog the wrong way. If companies are simply there to tap into a consumer market, they will be quickly detected and removed from the site. According to them, the manner of speech and frequency of involvement are dead give-aways.

Their advice:For companies to properly get involved, they need to be honest. They should first contact the moderator, be transparent about the company their work for and their intentions on participating in the forum. They need to dedicate time on reading up on the history and getting to know the active members. Companies should participate in existent threads and share insight on many topics (not just the temporary scope of their business). The opportunities are there and welcomed! Creating a face and personality to a corporation is unquantifiable. Patients will better trust the brand and companies will better understand the needs of their customers.

Several examples of successful corporate partnerships were mentioned. Once such case is that of PriCara, a division of Ortho McNeil-Janssen that sponsored the creation of a website addressing Pain, LetsTalkPain.org.

The company provided the funds to a third party who created a platform for communication between patients and physicians. The company does not prescribe advice to any individual and does not mention or market their products. Jenni Prokopy admitted to using the site for months before realizing the logo and its corporate affiliation. The company’s intention was simply to provide and outlet for communication and a reliable source for medical information.

More research needs to be conducted as to how patients would like to be contacted online. There appears to be a desire, and a definite need for credible medical information, but how to bring the two together is still unclear.

iPhone Apps lead the way.

I came across an iPhone article (well, lets be honest – promotion) but it demonstrates how new applications help doctors monitor their patients’ condition remotely and keep lines of communication open 24/7.

• Click here for more information on how iPhone applications are changing the medical industry

New technology emerges everyday that increases the speed at which information is transferred. These new technologies allow people to keep up with their jobs in more efficient ways than ever imagined. With the advent of these tools more time can be dedicated to addressing patients whose primary method of interaction is online.

Even today many doctors take weeks off work to do voluntary rotations in less privileged environments. For those who don’t have the time resources to leave their jobs for days at a time perhaps a new outlet for social responsibility could be their weekly participation in such online discussion. The trend towards “corporate social responsibility” is readily leaking into the non-profit sector affecting hospitals, clinics and even individual doctors. Involvement in medical fora appears to be a perfect marriage in “skills based volunteering” a concept now heavily funded by large corporations looking to donate to a cause (e.g. Johnson & Johnson).

Obstacles as Opportunities

Not the only one with this on my mind

Clearly I’m not the only one with this on my mind (and this back in 2006!):

I found this article in the The StarPhoenix (Saskatoon – yes, that’s in Canada ;-)

• Click here to read the full article

Patients Rate Doctors on Website: Whether your doctor is a sweetheart with encyclopedic knowledge, or running an hour late with the bedside manner of a bull, there's now a way to let the world know.


“Because there are currently no objective tools available to grade doctors, says Swapceinski, co-founder of RateMDs.com, he believes his website is needed. While regulatory bodies (like the College of Physicians and Surgeons of Saskatchewan) exist to monitor doctor competence, there's no resource telling patients about bedside manner, waiting times or crusty office staff, he said.”

Snip-its that address the disadvantages:

“RateMDs.com isn't making fans out of the medical profession in Canada. The organization that provides Canadian physicians with malpractice insurance has already asked the site to remove potentially defamatory comments.”

“Maura Gillis-Cipywnyk, president of the Saskatchewan branch of the Consumers Association of Canada, said a disgruntled patient is also more likely to rant on the site than a satisfied customer is to sing a doctor's praises.”

“The site is a subjective tool, she said and since the comments are anonymous, no one is accountable for any inaccuracies.”

But then the issue remains that it is anonymous, not that anyone and everyone can comment online… Plus, the article argues that often other patients will jump to the defense of a doctor who has been misrepresented and even doctors themselves have a chance to respond and mark comments they feel are unfair with a red flag. RateMDs.com also has safeguards in place to help stop libelous or unfair comments; moderators remove two to three per cent of posts within 24 hours because they contain serious and unproved allegations.

Regulatory effects:

“Saskatchewan's Health Quality Council, which reports to the public on the health system, is in the midst of considering whether they should be rating the province's doctors in a more scientific, objective manner.”

“A scientific tool might be more useful than user ratings for doctors, he said, because an organization like the Health Quality Council can provide support and education for doctors who garner poor ratings.”

I wonder how this initiative panned out today; I’ll keep you updated on my findings.

I already diagnosed myself on the Internet; I’m just here for a second opinion.

I always fear visits to my family doctor… not because he is incompetent, in fact it is quite the opposite, but because he is 84 (he is such a good physician that he still has an active practice at this age). What does concern me at every annual check-up is his weak trembling hand nearing my arm to find a vein from which to draw blood! It is impressive to see that even at this age some doctors not only understand the importance of the Internet, but can also find humor in the threats it may pose to their jobs.

In his office, above his desk you can find a framed cartoon that puts a smile on my face every time I visit. It looks something like this:

The truth I find in this scenario is what makes it so funny to me. Unfortunately, not enough people have access to medical information online, and most feel completely lost when it comes to finding even one specialist let alone a second opinion. Patients are often removed from decisions about their health but I believe that the Internet could empower them to gain relevant knowledge that helps them become more involved.

Many patients get in contact with their future physicians through online recommendation. I have often seen expert physician lists on forums, and I myself have commented and given advice on those doctors I felt did either a good or bad job.

Short anecdote: I did have an awful doctor once who compared me to a car! “If it takes you this long to decide on an operation, I wonder how hard it is for you to buy a car?” he tells my parents as they attempt to cover all the bases regarding my condition and annoy him with all their questions. Needless to say, we never visited that “expert” again.

In my research I gathered several stories I will share with you anonymously:

A friend shared with me her frustration regarding her father’s medical situation. He had undergone numerous surgeries all of which he believes to have worsened his condition. This particular patient would have preferred a more traditional approach that promised lesser but surer results. At that time he did not have a physician he trusted. In retrospect the family wishes they could have come into contact with different doctors for a second opinion before the operations.

A wife wanted to seek a second opinion regarding her husband’s condition from an international source. However, in her online search she could only come across lists of local, North American doctors. Not satisfied with her options she began to look up physicians that published articles or attended conferences about the particular disease and slowly found a name that appeared more frequently. She searched for the expert and quickly found that the hospital where doctor worked specialized in the treatment and research of the condition. She found the contact, visited her office and managed to start a dialogue that resulted in her husband’s participation in a new clinical study. “This would have been impossible without the Internet… I only wish that more people could reach this type of information easier,” she writes. This wife happens to be a software engineer who is well versed in Internet research, but what of the rest of the population; how are they to find the physicians (local or foreign) they seek?

A man is left suffering from his condition for decades because several physicians refused to treat him. He later gets into contact with other patients on a forum who provide him with the contact to their doctors and assure him that his needs will be taken seriously. The list of doctors, advice and support he receives from fellow users results in his surgery appointment. If he only had access to this list of doctors sooner, perhaps he could have been treated earlier.

I am curious as to how popular sites like “http://www.ratemds.com/” are, and how credible are their ratings?

Personally I do not find the layout or infrastructure easy to use, nor do I think there are adequate numbers of doctors listed. “Ratemyprofessor.com” seems to have a far more thorough list yet sadly shouldn’t your health be so much more important than your grades?

Thanks to a Fellow Forum User

First day in and I already hit a snag: I was granted permission to register an account with the Scoliosis Forum, but seemed to lack the authority to view or access most pages and threads, I couldn’t even edit my personal profile – this might make communication with other users somewhat difficult!

I sent out a distress email to the administrator, and lo and behold, a day later and everything was solved! But I wonder… was this the efficient work of the omnipresent forum moderator? or was it simply a computer glitch? I would have liked to receive an email back updating me on my forum status so I could at least attribute credit where it’s due. However once over this hurdle, site navigation was a breeze.

I now had the option to start discussions, post comments on other people’s threads, befriend and even send private messages to particular users. Aside from the typical options available in social network sites, some basic functions I identified as useful in the forum’s infrastructure were:

• the possibility to request reader receipts for messages and
• the automatic user-name identification system when selecting recipients for messages.
  

Some evident disadvantages in the design were:

• the 1000 character limit in private messaging. (I found this very cumbersome even when sending an initial greeting to another user)
• the limit of storage in the personal mailbox (although I understand the need for memory restrictions on free sites)
  

Reading through the forum I came across an interesting post that covered many of the topics I wish to address in my research regarding the benefits and outcomes of online medical discussion. With the permission of the user, I have attached and dissected the relevance of several segments in the post:

“One of the things that bothered me about my daughters’ situation was the assessment of her maturity by way of Risser; she was Risser 0 at diagnosis however almost 1 year post menarche and had already grown 6 inches taller than my wife.”
This implies not only that the user understands the methods in which doctors monitor his daughter’s condition but also that he is aware of additional medical procedures used to observe scoliosis development. A common fear is that laypersons will not be able to comprehend the complex medical jargon found in online reports, however this does not seem to be the case with many patients communicating in this forum.

“We live near a large metropolitan area with several SRS doctors. We sought a doctor who was not only an SRS physician (suggesting a focus on scoliosis) but also knowledge of skeletal maturity indicators. We were fortunate to find one 80 miles away, indeed this fellow writes many papers on skeletal maturity and, in my opinion, is the perfect doctor to assess my daughters somewhat unique circumstances. (As an aside, he used to practice at a Shriners hospital and used to offer the SpineCor. He is now participating in the Braist trial).”
This proves that the user was able to understand, search and find a physician he feels would best treat his daughter. He was interested in the doctor’s expertise, work experience, involvement in research and choice of treatment methods; hopefully one that would fall in line with how he would like to see his daughter treated. I believe given proper research and understanding, patients should be involved in their medical decision-making.

“Yesterday, we went to our appointment with great anxiety (even more so after reading Sharon’s post).”
This shows that other patient’s posts are of importance to users; whether they comfort or warn patients of situations they may want to avoid.

“In any event, we went into the consultation room after she had her xray. The doctor soon followed along with a student (intern? Resident? I don’t know, it is a university/teaching hospital).”
Clearly there was insufficient doctor-patient communication regarding the additional person; this could be considered inconsiderate behavior that may ultimately result in additional stress on the physician-patient relationship.

“I am not suggesting that bracing doesn’t help or that folks should use our isolated case history as reason to abandon bracing. I am just offering our experience as food for thought.”
Another common fear is that laypersons cannot decipher between credible medical information and mere opinion that is posted online. This is a legitimate concern, but clearly, some users post responsibly making an obvious separation between fact and personal belief. There is great opportunity here in helping users identify reliable information; perhaps physicians, clinics or hospitals can moderate or endorse forums creating a more dependable resource.

“I am indebted to ALL the forum participants here who helped me wade through the issues and literature.”
This is only one of many ‘thank you’ posts I read online further proving that the support, comfort and advice given on these Internet forums greatly benefits its users.

Thanks to a reader, I was also given a lead: scoliosis-support.org, a European site, which apparently receives brief visits from a medical professional who addresses questions from participants about a large medical trial she is conducting. It would be interesting to compare information, users and levels of comfort experienced when forums have professional involvement.

Joining the Online Club

With the help of Google, it took me less than 0.3 seconds to find the largest aggregate of Scoliosis forums online: http://www.scoliosis.org/forum/index.php.

I recognized that this was once, over 10 years ago, the informal collection of threads my parents and I participated in when searching for answers and support online.

My oh my how the layout, breadth and depth has changed!

I attempted to sign in with my old user name (that was hoping for too much) and quickly went to plan B: create a new account. I began to catch up on all the goodies I had missed over the years: new theories, new studies and findings, new technologies, new surgery and bracing methods… and unfortunately, many sad stories about children in worse situations than my own.

I intend to search and identify participants who are perhaps willing to anonymously share their experiences and opinions of the use and benefit of these online medical forums.

I will also continue my search for additional Scoliosis forums that may prove useful to my blog topics.

In the meantime, I’m attaching the rough draft of a literature review I conducted for a study I intend to pursue as a part of my Masters thesis. As with the purpose of this blog, I am interested in understanding the benefits of online medical search and communication, and how these mediums both affect and aid patients and doctors.

My paper, titled: The effect of online medical information and communication on doctor-patient relationships is merely a working concept with room for development (and tons of improvement). So, if any of you readers have spare time and are interested in sifting through the work (don’t worry, it’s double spaced, and half the paper is references) I gladly welcome feedback!

• Click here to read my literature review.