In addition to allowing medical providers to view symptom monitoring information, individuals can decide to share it with friends and relatives. This allows individuals to stay abreast of new health-related developments their loved ones experience—for example, it could allow adult children to keep an eye on their infirm parents from afar.
PatientsLikeMe offers a series of online “communities” organized around different conditions, including amyotrophic lateral sclerosis (also known as ALS or Lou Gehrig’s disease), depression, and HIV/AIDS. In the ALS community, patients provide information about their health history and current health status. The website generates a series of charts that represent progression of symptoms, changes in functional impairment, and treatments over time. Not only can patients review graphics mapping their own condition compared to a benchmark of other patients, but they can view the profiles of other members of the online community as well. A participant in the community can search for others who have similar symptoms or are undergoing similar treatment and leave a comment on those individuals’ profiles. The comments can ask specific questions about the other patient’s experiences, offer advice or recommendations, or seek to develop a relationship based on common ground between the two patients. The website includes an online forum where patients can discuss topics of interest. The system also generates treatment reports that contain aggregate information about the dosage of a particular medication and the reasons why community members started and stopped taking the treatment. These reports are hyperlinked to related information in the forum and to profiles of individuals who are using that particular treatment.
One expert described this interest in seeing which treatment options are most commonly used by others as part of an “iTunes mentality,” drawing an analogy to the graphic in the music-download store that allows users to view which songs are most popular. There is an apparent desire among patients to use how others are managing their health as an input in their own health decisions. Another expert noted that there are communities developing online around common experiences like taking antidepressants or experiencing infertility. As she explained, individuals are “hungry for personal testimonies;” they want to learn from others with firsthand experience what side effects to expect from treatments or how to use drugs off-label. WebMD has also introduced a similar function; to complement the monographs about pharmaceuticals, individuals can view one of the 47,000 reviews covering 3,000 medications that have been posted by other consumers.
This type of function is part of a broader phenomenon of social media, through which individuals contribute to the content on the internet. One expert described the emergence of blogs, wikis, and other related technologies as giving individuals access to “industrial strength” data rather than “commercial strength data,” by which she meant that consumers can read raw data—i.e., the actual experiences of patients, the full version of a report—rather than the versions of those data that are relayed by the news media. Blogs and social networking websites can also foster collaborative advocacy efforts around health policy issues.