MySLC

As defined by Ted Eytan, “Health 2.0 is participatory health care. The combination of content and community enables the patient to be an active partner in their own health care and the citizen to be an equal partner in improving the health system.” With the advent of new sites such as PatientsLikeMe.com, inow have a say in how they want their medical history distributed. Any patient can connect to others suffering from the same conditions, get advice, share treatment plans and drug efficacy information, and find emotional support. The reading cites sufferers of ALS banding together and conducting an unofficial study of the effects of lithium as a treatment plan as an example of the positive community-building and medical-field improvement capacity of health 2.0 platforms.

While right off the bat this new way that patients are organizing together might seem only good, medical professionals do have some concerns. Privacy is the biggest concern for most. Patients releasing previously restricted medical history give insurance companies, employers, and other third parties access to this information. This has the potential repercussions for patients of losing coverage, losing job opportunities, and otherwise having their own medical histories exploited for the gain of private companies. Others worry that poor information and bad practices will proliferate on online health 2.0 sites. The reading also cites the lithium example: while patients were able to organize together and conduct some unofficial research, lithium was shown to have minimal retarding effects of the spread of ALS symptoms—bad information led to the testing of an ineffective drug by a large group of people with minimal medical professional supervision.

PatientsLikeMe.com is minimal, bright, and clean in design. The loud catch phrase/call to action, “Live Better, together!™”, is the first thing to appear on the screen. The site provides patients connective services with the goal of helping patients to learn from each other, connect with people with similar experiences, and track their own health. There is a brief video that plays upon in which specific patients tell their personal stories and explain how PatientsLikeMe impacted how they experience and manage their illnesses. The site boasts more than 200,000 members suffering from 2,000+ illnesses, as well as 35+ (why they did not give the exact number I’m not sure) published research studies and more than a million treatment and symptom reports.

The site features various pages of statistical data collected from users that are easily explorable and understandable to anyone passing through (like me). You can find information one of three ways: by condition, by treatment, or by symptom. These pages are all linked together and connected to a fourth page, Research, that unites the three. You can also view a page list of registered public patients in order of most recent health tracking updates. Within these pages are group forums where patients, researchers, medical professionals, and third parties can interact.

Like the video on the home page, a video also explains the story of the company and skips long text blocks. PatientsLikeMe was founded by Benjamin and James Heywood and Jeff Cole as inspired by the Heywood’s younger brother Stephen, an ALS patient. The initial aim was for the site to provide an outlet for chronic illness survivors, which quickly developed into a vast, participatory patient network. PatientsLikeMe is a for-profit company, which is not explicitly clear upon first entering the site. This means that they have the right to sell any information that any users provide to the highest bidder. They claim to follow four core values: putting patients first, promoting transparency, fostering openness, and creating “wow.” The site feels very quaint over all..

PatientsLikeMe constantly promotes the importance of the strong community that they provide by stressing to the reader that any data shared with private companies builds a “partnership” with the patient and that company. PatientsLikeMe’s philosophy centers around this idea of building partnerships between patients and private interest groups for the good of the patient community overall. They believe that openness in medical history sharing is key to developing the most effective treatments and care methods. One specific tab on their website goes into detail on this Openness Philosophy. PatientsLikeMe has received funding from multiple well-known investment groups, including CommerceNet, Omidyar Network, and Collaborative Seed and Growth Partners, LLC. Interestingly enough, on the staff page, the head of product and head of marketing are prominently featured way before the medical research and patient experience employees. The board of directors includes only one individual with an MD and one individual with a phD.

The easiest pages to navigate too on the site provide these brief snippets of quaintly worded information about the company’s mantras. One of these pages is a testimonials page where positive patient and professional praise for PatientsLikeMe is featured. Below the testimonials page, the navigator will find “patient programs.” These are promotional pages for the organization’s various events and overarching community development programs. Again, these are cute, quaint, and appeal to the viewers’ emotions. In these sections, there are more photos and videos than words.

The most interesting aspect of the site, however, is the privacy policy. Here, the organization details all of the information that they collect:

• Biographical information, e.g. photograph, biography, gender, age, location (city, state and country), general notes;
• Condition/disease information, e.g. diagnosis date, first symptom, family history;
• Treatment information, e.g. treatment start dates, stop dates, dosages, side effects, treatment evaluations;
• Symptom information, e.g. severity, duration;
• Primary and secondary outcome scores over time, e.g. ALSFRS-R, MSRS, PDRS, FVC, PFRS, Mood Map, Quality of Life, weight, InstantMe;
• Laboratory results, e.g. CD-4 count, viral load, creatinine;
• Genetic information, e.g. information on individual genes and/or entire genetic scans;
• Individual and aggregated survey responses;
• Information shared via free text fields, e.g. the forum, treatment evaluations, surveys, annotations, journals, feeds, adverse event reports; and
• Connections to other people on the Site, e.g. invited care team member, mentors, feeds, subscriptions.

After that, there is a section listing the information that the organization promises not to share with anyone:

• Name, as collected as part of registration or in a Member’s Account Information;
• Email address, as collected and verified as part of registration or in a Member’s Account Information;
• Password, as collected as part of registration or in a Member’s Account Information;
• Mailing address, as collected via email, forms, or private message as part of Member programs such as t-shirt giveaways and PatientsLikeMeInMotion™;
• Date of birth, as collected in My Profile; and
• Private messages.

While PatientsLikeMe does not explicitly say “your information will be sold for our profit,” the privacy section does say that any information, besides the above listed “restricted data,” may be shared at any time. All information may be when: it could be used to improve user experience on the site or for research, in emergency situations, when required to by law or legal process, or in the event of a merger. In the event of a merger with another organization, all information is basically up for grabs. Though this may seem a bit scary, and at times I’m sure information sharing is a bit invasive, most users’ information is shared in aggregate for use in medical research. After much promotion of this pretty, clean, transparent vision of the patient experience and community, PatientsLikeMe finally explains (briefly) the risks involved with sharing medical history information.

To get the full lowdown on patient community sites like this, I e-mailed my mom, a genetic counselor in San Jose, California whose job it is to direct patients to support services. She went all out and actually created an account on PatientsLikeMe. Here is what she has to say:

“Some of it is harmless, some of it not so harmless.  People with non-specific symptoms and no prior diagnosis can pick a forum and post there and get answers that may or may not apply to them.  And it can be quite difficult in a forum to share all of the information that someone would need to actually be helpful - people are asking questions in a sentence or two that may not provide enough information to formulate a reasonable answer, even if you are a medical professional (I saw quite a few examples of that sort of thing).  I can see that it might be helpful as a support system and it might be really helpful if you are living with a chronic illness like diabetes and you want to connect with others to learn about experiences with insulin pumps and stuff like that.  I was able to sign up easily, saying that I was a caregiver/family member of someone with type 2 diabetes and was allowed access to everything.  There is no way to check if someone is who they say they are or if any of the information is factual.   It would be a perfect vehicle for a snake-oil salesman to find vulnerable customers.  But so long as people know what they are sharing and take any info they get with a grain of salt, then I can't see a whole lot of harm in it.  Like any public forum, there is plenty of opportunity for abuse.”

To compare different forms of patient community networks online, here is the website for the California-based health care organization Kaiser Permanente:

https://healthy.kaiserpermanente.org/html/kaiser/index.shtml

Although Kaiser Permanente is a health care provider, rooted in physical medical facilities across the country, their website offers membership in a network of doctors, hospital administrators, and other patients. The site connects these users in many of the same ways as PatientsLikeMe, although with the ultimate goal of selling health plans to users. It is interest to note the similar color schemes, layout designs, and friendly, relatable photographs, videos, and catchphrases.

Discussion questions:

Do you think that health 2.0 platforms like patientslikeme have a higher capacity for good or bad? Does false information/inaccurate reporting and fake profiles cause outweigh the benefits of patientslikeme.com? Would you create a profile and connect to other patients if you had a chronic illness?

Is the site’s image warm, inviting, and supportive or fake, commercial, and hokey? In other words, what is your measure of the site’s authenticity?

What kinds of problems do you think that fake profiles cause on the site’s forums? What role would anonymous users play in the patientslikeme setting?