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Two research papers were published this month on the Health 2.0 website, PatientsLikeMe. PatientsLikeMe is arguably the only “real” health social network online today, because it lets patients share actual data that matters with one another — their personal health data. (Other supposed health social networks seem more focused on the “social” than the “health,” allowing for little integrated data sharing.)

The two research papers provide some interesting data points and insights into both the disease process itself, and how e-patients are using Web-enabled tools such as PatientsLikeMe to improve their own care.

The first study looked at one of the diseases PatientsLikeMe covers, ALS. The researchers administered two surveys to basically look at people’s perceptions and knowledge — both patients and the patient’s self-report about what their physicians told them — about ALS. Here’s the abstract (Wicks et. al, 2008):

Once thought to impact only voluntary motor function, ALS/Motor neuron disease (MND) is now seen as a multi-system disorder in which a minority of patients experience mild cognitive dysfunction or frontotemporal dementia. Despite clinical guidelines advocating supplying complete information to patients, educational materials on ALS often state that the mind is unaffected. We sought to establish how much patients and caregivers understand about ALS, what they have been told to expect by their physician, and if they would have appreciated more complete information.

METHODS: A two-part survey was administered online. An ‘ALS quiz’ gauged participants’ knowledge of physical and psychological aspects of ALS. A second questionnaire assessed which symptoms patients had discussed with their clinician and explored patients’ desire to receive information on psychological effects.

RESULTS: A total of 247 ALS patients and 87 caregivers participated. Participants knew less about psychological symptoms than physical ones (72% correct responses versus 82%; paired t((333)) = -5.04, P < 0.001). Patients commonly reported being told by their doctor about physical symptoms such as problems walking (85%) or stiffness/cramps (74%) but not psychological issues like emotional lability (46%) or cognitive change (11%). The majority of patients (62%) and carers (71%) indicated a desire to be informed that cognitive change or dementia might occur. CONCLUSION: ALS is a multi-system disorder. However, despite a desire for more information from patients and their carers, healthcare professionals continue to primarily address only the physical consequences of the disease.

The obvious problem with this sort of survey research is that you’re relying on patient’s self-report about what a third-party told them about the disease, rather than what they actually said. Historically, such third-party self-reporting can vary in reliability and accuracy.

Nevertheless, one of the points of this study was to show the type of research that could be more readily conducted with a 247-patient ALS community at your fingertips online.

The second study (Frost et. al, 2008) was more of an exploratory and narrative paper that gives people a sense of the ALS community on PatientsLikeMe and how a hopefully-representative sample of that community uses the community. It was titled, Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data.

This study only looked at 123 comments out of 17,059 posted to the community. (One of the interesting footnote findings to me that out of those 17,059 comments, only 7852 — about 46% — were composed from scratch. The rest just used one of the default comments you could send another user (such as “Thank you”).)

(Another interesting footnote was that in the course of 15 months, only 63% of the registered users posted a comment from scratch to the site. What are the 37% doing on the site, one wonders, given that messaging is a pretty integral part of any popular social networking website.)

Back to the study…

The thing that makes PatientsLikeMe unlike a regular health support group site like NeuroTalk is the addition of patients easily adding their personal health data to their online health profile. Like many other PHRs online, one must manually enter in one’s data and keep it updated regularly (for instance, when adding a new medication). In addition, you are encouraged to note changes in your condition — getting better or worsening, and track anything and everything that might be related to your condition — diet, treatments, changes in your life, work, supplements, exercise, you name it.

The results’ section of the study looked at three specific categories or types of comments: (1) targeted questions to others with relevant experience, (2) advice and recommendations, and (3) forming and solidifying relationships based on similarity.

Because this was a retrospective study, the only data relationships the researcher could draw were correlational and based upon the patients’ self-report. The first category, targeted questions, illustrated these possible relationships. Unfortunately, such relationships are only as good as the data upon which they’re based. The researchers gave no indication of the reliability or accuracy of the patients’ data in their records, which would seem to be a good foundational base upon which to build studies such as this. I am not certain what the researchers base their assumption that such records are reliable and accurate.

The second category is interesting, but not unique to PatientsLikeMe. Virtually all online patient support communities are full of positive advice and recommendations that members share with one another.

The third category describes how many people in a health support community find others online with share activities and hobbies. Interesting, but there were no data presented that suggest such communications actually show people “solidify” their relationships based upon these shared hobbies.

This is an introductory study, and as such, it does provide some interesting insights into how patients use an online social network in health:

Although small in number, the comments selected for this study represent an undetermined fraction of all uses of profile data. Nevertheless, they offer insight into the potential value of patients sharing health information.

This study represents a first examination of the use of shared medical information, which is still a novel model for personal health data.

I agree. I’d like to see more information about the PatientsLikeMe data itself — how many users enter in data regularly, how reliable their data entry is, and whether we can trust that data when it comes to analyzing it on a more global basis.

Update: After talking more with the lead researcher on the second study, I believe I may have misunderstood exactly the type of data the researchers examined. They were looking at profile comments that user’s left for one another on their profiles (not in the public discussion forums, or elsewhere on the site).

The researchers were interested to find that members were carefully looking at one another’s profiles, examining the data displayed there, and providing advice based upon that examination. Research of this nature has not been done previously because such data were not available — most health sites don’t have this feature available (much less have any researchers analyze it!).

So I apologize for my initial reading of the study was inaccurate.

PLM is a fantastic, research-oriented (both on the personal level — helping people track their own health progress for specific conditions, and on the aggregate level to look at broader research trends and such) social network that is, I believe, the gold standard amongst social networking health websites. I greatly look forward to reading future studies coming out from this passionate, dedicated and superb group of researchers.


Frost JH, Massagli MP. (2008). Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data. J Med Internet Res, 10(3):e15.

Wicks, P. & Frost, J. (2008). ALS patients request more information about cognitive symptoms.
Eur J Neurol. 15(5):497-500.