I just received this press release from the team we work with on TuAnalyze. It's got some great findings as well as things we can learn from to improve the community. What things, among the ones mentioned here are you missing most on TuDiabetes/would you have us address first and foremost?

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Researchers make recommendations for improving sites, provide safety tips for users

Boston, Mass. – Nearly one-half of U.S. adults who use the Internet participate in social networks. While these increasingly include health-focused networks, not much is known about their quality and safety. In one of the first formal studies of social networking websites targeting patients, researchers in the Children’s Hospital Boston Informatics Program performed an in-depth evaluation of ten diabetes websites.

Link to PDF with complete study published on JAMIA

Their audit found large variations in quality and safety across sites, with room for improvement across the board. As reported online January 24 in the Journal of the American Medical Informatics Association, only 50 percent of the sites presented content consistent with diabetes science and clinical practice. Even fewer offered both scientific accuracy and patient protections such as safeguarding of personal health information, effective internal and external review processes and appropriate advertising.

For instance, seven of the ten sites did not allow members to restrict the visibility of their profiles. Five carried advertisements that were not labeled as such. And three sites went as far as to advertise unfounded “cures.”

“We saw that people are sharing incredible amounts of personal health information on these sites, including highly identifiable information,” says Elissa Weitzman, ScD, MSc, lead author on the study and an assistant professor in the laboratory of Kenneth Mandl, MD, MPH. “They are eager to accelerate their understanding of the disease, obtain support, find treatments and see if their experience is common or different.”

“There is on the one hand an enormous focus in the U.S. on health information privacy,” Mandl adds. “But privacy in a social network is somewhat of an oxymoron. On the whole, these networks tend to be about exposing your information online.”

The team evaluated diabetes websites that appeared prominently in Google searches and allowed members to create personal profiles and interact with each other. They looked at four key factors:

(1) agreement of content with diabetes science and clinical practice standards,
(2) practices for auditing content and supporting transparency,
(3) accessibility and readability of privacy policies, and
(4) the degree of control members had over the sharing of personal data.

The average number of members per website was 6,707. Activity ranged widely among the sites, from over 100 new posts per day to less than 5 new posts per day.

The majority of sites studied did not include a “disclaimer” encouraging patients to discuss their care regimen with a healthcare provider. Many sites also missed opportunities to communicate essential diabetes information, such as the definition of “A1c”—a biomarker commonly used by diabetics to access blood glucose levels.

In addition to recommending improvements in these areas, the authors saw a need for increased moderation, for the credentials of moderators to be more visible and for periodic external review. Further, potential conflicts of interest—such as ties to the pharmaceutical industry—needed to be more clearly disclosed, and privacy policies easier to understand.

Diabetes is only one illness in the rapidly growing list for which there are online social networks with thousands of users. The researchers chose to study diabetes-related networks because they were among the earliest to emerge and remain among the most active. They and colleagues in the Children’s Hospital Informatics Program are further studying how these sites are used—how people choose to interact with them and how specifically they share their medical information. Last year, Mandl and Weitzman developed an application for the social networking website TuDiabetes that allows users to submit their A1c levels to be displayed in a worldwide map, as part of an effort to encourage diabetes management and inform public health efforts and research.

The two believe that the emergence of online health communities and their large number of participants reveal unmet needs for information and support of patients and families. “Social networking activity is clearly replacing or adding value that is missing in the standard healthcare system,” Mandl says.

“We sought to jump start a conversation about how to balance patients’ safety with their autonomy,” Weitzman says, “as we’re in an era where terrific levels of healthcare communication are happening outside of the usual channels.”

This study was funded by the Centers for Disease Control and Prevention and the National Institutes of Health, including the National Institute on Alcohol Abuse and Alcoholism.


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Safety Tips for Patients Using Online Social Networks
1. Look for sites where the basic description of the disease and how to care for it is consistent with information provided by your doctor. Be very cautious of sites that advertise miracle “cures.”

2. Find the privacy policy of any website where you register as a member, and make sure that you understand it.

3. Try to use sites where you have maximal control over the sharing of your health data—where you can designate whether the information you disclose will be available to anyone online, members only or members who are “friends.”

4. Look for websites that clearly label advertisements and disclose conflicts of interest.

5. Try to use sites that have moderators and at least periodically undergo external review.

6. Always remember that going online is not a replacement for visiting your doctor.

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Children's Hospital Boston is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including nine members of the National Academy of Sciences, 12 members of the Institute of Medicine and 13 members of the Howard Hughes Medical Institute comprise Children's research community. Founded as a 20-bed hospital for children, Children's Hospital Boston today is a 392-bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children's also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about research and clinical innovation at Boston Children's visit: Vector Blog.

 

Update (Feb. 23, 2011):

In connection to this study, a story got published on US News Health:

http://health.usnews.com/health-news/diet-fitness/diabetes/articles...

where I had the privilege to share our position on the topic:

"In a time when privacy matters on Facebook -- the biggest social network of all -- are so top of mind, this study is very timely and relevant... We need to make sure people with chronic conditions like diabetes feel comfortable connecting with others online to become more empowered and informed patients, who can also get the support that is so important with this type of disease."

Tags: PR, communities, diabetes, information, networking, networks, online, patient, privacy, social

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Totally agree with Kristin on this one. Our profiles should be protected from the general public, but our posts, unless in a private forum, should be searchable. That's how many of us found the site in the first place. If we eliminate that, we'll be severely impacting the number of new registrations the site receives... and I wouldn't want to see that happen. :)
Richmatik, Kristin,
This is actually possible.

Click on Settings (on the right), choose the Privacy option (on the left) and pick the visibility options you feel most comfortable with.


Here's an FAQ from our Help page that describes this process.
Kristin, one must be a member of TuDiabetes to view your page. I signed out and then clicked on your picture, and it told me I must be a member of TuDiabetes to view your page.
Oops! I forgot that I had already changed this setting then! Thanks for the information! I'll add a bunch of info to my profile soon :)
I think Tu is unique in many aspects. In the years leading up to my joining, one site would consistently come up as relevant to my google searches. Unlike other DOCs, I was rarely disappointed by the depth or accuracy of the information I found. And for someone with a PhD in diabetes/immunology-related research, this is not such a low bar for my expectations. In fact, I almost completely avoided DOCs for the prevalence of misinformation. Tackling misinformation is difficult, but I know that any one of numerous Tu members will show up to correct it when it's posted here. So I really salute you for building a site that attracts such a well-educated, well-informed crowd!

As a result of the members of this particular community, I think Tu fairs much better than other sites in terms of the biggest issues:

References: Whenever someone posts something that is not 'common knowledge' I personally do like to see references. But, again, I think Tu fairs so much better than other communities. I can't count the number of times I show up to a thread and find all kinds of graphs and professional references. Many members ask for them when they aren't provided freely.

One-sidedness: I think the Tu community represents a vast diversity of opinion on a lot of topics. Many threads are not as one-sided as they could be on a site that only welcomes individuals of a certain belief set. Contrary to popular opinion, there are very few absolutes in science or medicine, and I think Tu members reflect that. As long as the community is multi-sided, I don't think it matters as much that individuals can be one-sided in their thinking.

Medical providers: Most treatment-related threads on Tu advise an individual to find a good endo and to discuss all decisions with them. Such a recommendation could maybe be integrated more into the website than it is now, but I think members self-police this well and it probably goes without saying on the internet. There are too many people who think that, because they can use google, that they can treat themselves and others without assistance. This isn't such a problem on Tu, but I think people in general should be aware that not all info online is accurate. Nor is all info from a doctor, for that matter.

Moderating and Credentialing: Legal implications of modding/evaluating content aside, these are more difficult to implement in a DOC without losing some of its character. Once you start moderating content and making factual judgments, the administration is essentially making policy decisions. This is contrary to what a DOC is, where participants and not the admin team generates and judges content. The medical field as a whole is moving towards an evidence-based approach, and that requires evaluation and discussion.

As far as displaying credentials/experience, I'm for giving users the option to go through a verification process. I don't think you'll find too many medical pros signing up for liability reasons, but part of evaluating information is evaluating its source. I'd personally have no objection to a big red box around my name saying that I'm not a medical professional and am not qualified to give medical advice.
Thanks for the thorough comment, Tom. It is humbling to read these many validating comments about the community. All I can say is, it is the fruit of the community and the culture and practices we work hard to maintain.
I am a recent member and my main concern so far has been any instance where people are advised to NOT seek advice from an appropriate medical professional or to NOT follow standard practices -- especially when the use bullying words or (unverifiable) medical credentials are used to back up this advice.

It's one thing to say, "I never change my lancet." That's a statement of fact that people can take or leave. It's another thing to say, "My endo says diabetics don't ever have to change their lancets unless they feel like it." Who could verify that? It's still another thing to say, "People who change their lancets are anal and hyper-vigilant." Actually, it's the standard of care recommended by doctors, CDE's and the FDA-approved literature that comes with the device. Even if 90% of diabetics (I have no idea...) reuse their lancets, it's still not appropriate to bully people about following FDA approved standards.

When the subject is something like changing lancets, it's not that big of a deal, but when someone posts, "Don't seek medical advice when you overdosed on your medications. Listen to me instead. I'm a medical professional." I think that kind of unverifiable anti-advice should be moderated -- it's dangerous to the recipient of the information and to the site (liability).

I know that there is a meme on the Internet that patients know best, doctors are idiots and drug companies just want your money. We've all heard it a thousand (ten thousand?) times. But there is a thin line there, sometimes, between stating an opinion ("I had better control when I split my Lantus dose in two." or "Some people find that they have better control when they split their Lantus dose in two.") and giving medical advice without a license ("I don't care what your doctor said, don't listen to him. You should be splitting your Lantus dose in two. Just do it.") We're all guilty sometimes of skirting that line. I think moderators should set us straight when we cross it.

I feel safer on a site where anything that smacks of someone intimidating or bullying a more-timid, confused or less-knowledgeable person into following questionable medical advice is nipped in the bud by moderators. It can be done gently and with a caring approach, helping people to learn more appropriate ways of writing their opinions.

We're here to share information, experiences and support with diabetics from all walks of life -- not to have our medical care orchestrated for us by bossy strangers with unverifiable credentials. ;0)

Unless a medical professional wants to put their name, their credentials and their opinions on the line, I don't think it's safe to let anonymous strangers hang up an invisible shingle and start practicing medicine on-line.
If you read the Terms of Service, it is pointed out that stuff on this site should not be taken as medical advice. Anyone posting here is intelligent enough to know that they are not on a doctor’s site and people giving them advice are not doctors. I certainly don’t to have disclosure statements popping up every time I try to read a post.

Maybe you are reading different posts than I am but I have certainly not seen anyone bully someone into trying their suggestions. Diabetes is a self management disease and also a YMMV disease. Just because something works for one person doesn’t mean that it will work for another. People who learn how to manage on their own generally do better with their control than someone that needs their doctor to hold their hand for everything. A lot of people land here because they have a problem that is not being solved by their doctors.

I am guilty of calling doctors idiots – probably because I have had a few that really were idiots. I also tell people to get copies of labs and question what the results mean. I had a bad foot infection and almost lost my leg after I had an MRI and culture that both showed I had an infection but the doctor decided I did not and stopped antibiotics. He also put a wound vac on my foot that should not have been used with an infection – that turned my bone into mush so now I get to live with cadaver bones in my foot. When I decided to change doctors and needed copies of my records, I found out that I still had an infection. I have also had a doctor tell me my thyroid was fine when I had copies of the labs she did sitting on my lap showing my thyroid was so low, the lab could not even assign a number to it. Last summer, I went to a doctor that told me my Vitamin B levels were low and I should start taking Vitamin B. She even wrote it on a slip of things she wanted me to do. I always request copies of my labs from the place I have them done and when they came, my Vitamin B levels were flagged as high – they were above the lab range and not low. So yes, I think doctors are idiots and will tell people to question stuff.

I have gastroparesis and I would hate to think what shape I would be in today if it were not for sites like TuDiabetes that my fellow diabetics can give advice on things to try. My blood sugars were bouncing all over the place and I found help online, not from a doctor. Someone I know went to the Mayo Clinic and she was told she would never get her A1c below 7 with gastroparesis. I know that is not true because my A1cs are in the 5s thanks to my fellow PWDs. I also have neuropathy so for me, it is also a fight to keep that from getting worse. I quit asking doctors for help because they did nothing to help me so I am extremely grateful for TuDiabetes and the knowledge of members here. They have literally saved my life!
Scroll down to the bottom of the page. There is also a disclaimer there!
"Anyone posting here is intelligent enough to know that they are not on a doctor’s site and people giving them advice are not doctors. "

I'm not trying to be rude, but I think this is a little naive. At least it overstates the case to say that "anyone" posting here is intelligent enough not to follow bad advice. Some people are easily manipulated, intimidated, compliant and timid. They will take the advice they received most recently, even though they know quite well that it's not coming from a doctor. There have actually been posts here by people who should have been calling 911 rather than putting a question up in a forum.

I think it's a good idea for moderators to watch out for posts that say "here's what I do" versus posts that say "this is what you/everyone should do." In the latter case a brief warning is appropriate to remind people of the Terms of Service.

Terry
I agree with you, I should not have stated it the way I did. I have read some of those posts also and wondering why they were not on the way to the hospital.
Thanks for your post, Terry. That's all I'm suggesting. "What I do" vs. "You should do".

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