Patient Choices: How Open Are You Now?

At PatientsLikeMe, we have a Privacy Policy that explains what we do with the health data that patients like you share. But as many of you know, we also have an Openness Philosophy, which outlines what we believe are the substantial benefits of being open versus private about your condition. Here’s an excerpt:

“Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions.

But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.“

But what do you think about openness? We realize this is a personal decision that you have to make not only as a member of PatientsLikeMe, but also as part of your everyday life. Yesterday, we delved into the results from a recent patient poll on how openly you share your diagnosis with various people in your life (Patient Choices: The Shape of Sharing). Today, we’ll to take a look at how PatientsLikeMe has influenced the openness of patients like you.

In the poll, we asked if you had told more people about your condition as a result of PatientsLikeMe. 32% of you said yes, while 68% of you said no. Thus, roughly a third of you report that you have increased your level of openness due to PatientsLikeMe.

Those percentages change slightly when you break out the answers by condition. Nearly half of respondents with ALS/PLS/PMA (42%) and epilepsy (40%) have told more people as a result of people a member of our site, whereas approximately one in four people with chronic fatigue syndrome / ME (19%) and HIV (25%) have shared more.

So do these findings mean there’s an increase (or bias) in openness activity among the population? We’ll need to do more rigorous research to figure that out. According to Alan Westin¹ of Columbia, a health social scientist who measures privacy trends among the general public, only 15% of people are “privacy unconcerned” meaning that they are willing to share their health information without fear of discrimination or retribution. The next 60% are considered “privacy pragmatists,” which applies to people who are willing to share some health information if the benefits are explained clearly and well understood. PatientsLikeMe may now appeal to privacy pragmatists because of the clear benefits shown from information sharing.

Clearly, social media provides a new method of disclosure, and patients like you everywhere must choose whether it’s right for you. Is it easier to tell people online instead of face-to-face? Are there more benefits than risks? And ultimately, is it better to be open or private? It’s up to you to make those choices for yourself.

We’ll close with a Mood patient’s experience of how using the site has helped to share more:

“Although I have not created a large number of posts on PatientsLikeMe (PLM), just the few posts that I created gave me confidence in explaining my condition and how it has impacted my life. PLM allowed me to explore others’ perceptions of their experiences: Knowing I ‘belonged’ here, and was understood here was valuable in my recovery. So being comfortable here, at PLM, made me feel more comfortable discussing my diagnosis away from PLM.”