CAMBRIDGE, MA–(Marketwire – April 13, 2011) – According to a new PatientsLikeMe® Poll, almost one in three (29%) patients have withheld certain health information from their doctor. Of the 4,364 poll respondents, all of whom are members of PatientsLikeMe’s online health data-sharing community (www.patientslikeme.com), nearly half (47%) indicate that they have chosen not to share certain health information with an employer, while 14% have withheld information from insurance companies.

“Here’s a population of arguably the most open patients, who share detailed data about everything from their treatments to their sex lives on PatientsLikeMe, and yet some of these individuals feel uncomfortable sharing with other stakeholders in healthcare,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe. ”If we’re all going to make healthcare better, then it’s time we really understand what’s keeping patients from sharing information. That insight is crucial to improving the system.”

In their poll responses, patients also identified some of the reasons why they chose not to share their health information. Patients’ unwillingness to share certain information with doctors is driven by more emotional triggers. Almost half (44%) say they didn’t tell a doctor about something related to their health because they “didn’t want to be lectured/made to feel bad;” second to that was fear of embarrassment (36%). What aren’t they sharing with doctors? Respondents said symptoms (41%), lifestyle information such as “diet, alcohol, exercise, or smoking” (39%) and failure to take a prescribed medication (29%).

Alternatively, the majority of patients who withheld information from an employer cite more practical implications. Sixty six percent (66%) of patients indicate the top reason as being “none of their employer’s business,” but nearly half (49%) say they are afraid of losing their job and about one-third (35%) are afraid of not getting a promotion. Finally, the individuals who kept certain health information under wraps from their health insurance companies report they did so out of fear of losing coverage (39%), fear of not having a specific treatment or procedure covered (39%) or fear of premiums going up (25%).

The complete PatientsLikeMe® Poll results can be downloaded here.

NOTE TO EDITOR: All poll results must be sourced as originating from PatientsLikeMe®.

Poll Methodology
Between March 22nd and March 29th, PatientsLikeMe invited all members who had been active on the website within the past 90 days to participate in the PatientsLikeMe® Poll; 4,364 members completed the survey. Mean age of respondents was 49 years (SD 12, range 13-84).

About PatientsLikeMe
PatientsLikeMe^® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe^® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

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.”

REFERENCES

1.  Westin, A.  “Americans’ Changing Concerns About Health Privacy.”  As presented at the National Academy of Sciences ceremony.  2008.