When was the site created
2004 but Launched on Oct 10, 2005
Estimated total population size
~250,000 unique users
Estimated active population size
“Currently, there are more than 7,000 caregivers registered with PatientsLikeMe” (blog section of PatientsLikeMe)
Private, for-profit organization managed by a few individuals
What is the audience for this Online Community?
There are two primary audiences to PatientsLikeMe.
1) Patients who are undergoing treatment for chronic illness and disorders (i.e. beyond everyday maladies such as the common cold).
Selling patient data??
PatientsLikeMe describes itself as “a for-profit company with a ‘not just for profit’ attitude (PatientsLikeMe website). As such, there are no visible advertisements anywhere on the website. Rather, the website generates revenue by selling information about its users to companies and organizations in the medical industry. The information is aggregated, usernames and any personal information is removed, and sold to such groups as pharmaceutical companies and medical device manufacturers.
Major activities on the site
The major activity of this site is a support forum for patients and caregivers to exchange advice and emotional support. Operating with large sets of data, PatientsLikeMe also offers an encyclopedia of medical treatments, symptoms, and ongoing research. Users can search and filter through each of these sections for only the specific information (e.g. medical condition) that pertains to their situation. Much of the information is user-generated and is presented in an open-data sharing environment. These features are very visual, often in the form of charts and graphs.
Sociotechnical processes associated with user contributions
The reasons behind user contribution are highly motivated by the reason for why the user initially comes to the website. According to Aronson, “people come to like things for which they suffered
because this is the only way they can reconcile their views of themselves as intelligent
people with the actions they have performed” (Aronson 1997). Caregivers come to exchange information about how to care for someone they care about, whereas patients come to self-diagnose or learn about how other patients are coping with similar conditions. These topics can harbor significant emotional and personal investment, which many users share openly on PatientsLikeMe as a form of venting. One patient went on a rant about his current doctor and the complications of the insurance process. Other replies included, “Don't tell me to stop taking my meds. Don't say, "I got over it, and I know you can too."
Other forum users are especially eager for a timely and prescriptive response to their health concerns. This is evidenced by the sheer number of new forum posts started by individuals who believe that new forum posts will generate more attention, but in reality do just the opposite and is viewed as clutter and desperation. There is little incentive in place for users to click on forum posts with a lower number of replies, especially if the content of the post bears little relevance to the situation of the user. As expected, empathy played a large role in the quality and quantity of replies: posts started by patients were more likely to elicit response from other patients, and vice versa for caregivers. Furthermore, users have the option to be notified by email of any activity that occurs on a forum thread in which they have invested significant time and interest.
The one salient measure of user reputation is the “helpful marks” feature, which is a total count of helpful posts that the user has contributed to the forums on PatientsLikeMe. Medical advice from users with higher helpful marks tend to receive even more helpful marks, even if the tone of the reply seemed unclear (e.g. either condescending or authentic).
The one gamification strategy involves star ratings. Each star rating accrued represents a certain amount of health information that the user has chosen to share publicly. Once the user acquires 3 stars, he/she is eliglbe to win a free t-shirt. These stars are prominently displayed next to each user’s chosen pseudonyms. Users with more stars received more profile views and replies from other users.
Sociotechnical processes associated with user interactions
Every user has the ability to complete a profile about himself/herself, which displays the following sample information:
Male, 42 years
NC, United States
Profile: 12,679 views, 82 followers
Forum: 1,293 posts, 3,249 helpful marks
Comments: 1 update, 4 for others
Who is caring for me: (lists 2 people)
Photos of family, hobbies
Member since: Apr 07, 2010
Last Login Sep 17, 2012
The copious amount of profile information that a user can provide potentially serves as a basis for connecting with other users. Kraut and Resnick claimed that “encouraging newcomers to reveal themselves publicly in profiles or introduction threads gives existing group members a basis for conversation and reciprocation with them and increases interaction between old-timers and newcomers” (Kraut, Resnick 2011). As a result, many forum replies and user interactions included content relating to user’s families and interests outside of their medical conditions.
Other users can “say hello” or “private message” any other user. Additionally, users can “follow” other users. The most followed users are those who either have a high number of helpful marks or were featured on the blog section of PatientsLikeMe. It was not uncommon to see other users commenting on the old journal entries of deceased users with a higher number of profile views. Sometimes, there would be users who reply on behalf of the deceased user (such as a close family member or caregiver).
The multitude of communication channels in the website seem to encourage honest user interaction with each other. This begs the question of which channels are most highly prioritized when PatientsLikeMe sells this information to other organizations.
Onboarding new users
As soon as a user registers, PatientsLikeMe prompts him/her to fill out a brief introduction to explain why they are registering. This introduction is viewable by the community and thus has the potential to spark connections and user contributions.
By going through the above user user initiation process, I felt that PatientsLikeMe was going to treat my data and health concerns very seriously, as opposed to a one-click join process. This sentiment was echoed by Kraut and Resnick with their design claim that states, “Entry barriers for newcomers may cause those who join to be more committed to the group and contribute more to it” (Kraut, Resnick 2011).
After registering a new account myself, I experienced no barriers, nor did I get “bitten.” There is an FAQ area that is comprehensive and searchable.
Interesting pieces in their Terms of Service
PatientsLikeMe breaks up their terms of service in to 4 sections: Data for good, Openness, Privacy, and User agreement.
The website administration is very clear to state that they are proponents of open data. They write, “We believe that the Internet can democratize patient data and accelerate research like never before. Furthermore, we believe data belongs to you the patient to share with other patients, caregivers, physicians, researchers, pharmaceutical and medical device companies, and anyone else that can help make patients’ lives better.” Their privacy section is very detailed and explicit with the types of data they provide to other organizations in the healthcare industry.
Another interesting policy is: “ If a Member chooses to deactivate his/her account, PatientsLikeMe will not display or sell the data in that account as of the date of deactivation. However, the Member’s data will remain in the system for auditing purposes, and research conducted prior to the deactivation of a Member’s account will still include the Member’s data.”
This seems somewhat contradictory to the open data ethos that the website administration had conveyed in the “Openness” section.
PatientsLikeMe is an innovative website that represents opportunity at the intersection of open-data and social networking. There is an innate incentive for patients to commit and stick around, especially for the duration of their medical conditions - many of which are long-term. As for the caregivers, many will stick around as a result of the growing population of baby boomers who will gradually require more care and supervision in their later years.
During my analysis Patients like me, I was surprised to find no visible moderation system. Many online support groups use moderation systems to limit the amount of negative and non-constructive feedback from users with malicious intent (Huh, et al 2013).
Additionally, I believe the site was ingenious for marketing itself as an open-data platform for health information, which seemed to assuage other users with privacy concerns.
Huh, Jina, David W. McDonald, Andrea Hartzler, and Wanda Pratt. "Patient Moderator Interaction in Online Health Communities." AMIA Annual Symposium Proceedings. American Medical Informatics Association, 16 Nov. 2013. Web. 11 Mar. 2015.