2:45 - 3:05 pmSaturday, September 28
LK 120
Health-related data sharing on social media: attitudes of American patients
LK 120
Health-related data sharing on social media: attitudes of American patients
Adjunct Researcher, Forumclínic Group, Hospital Clínic de Barcelona
Background The use of social networking sites in the United States has greatly expanded to all age groups. The use of these tools by patients is not an exception as they are interacting with each other,... Read more

Description

Background

The use of social networking sites in the United States has greatly expanded to all age groups. The use of these tools by patients is not an exception as they are interacting with each other, learning how to better manage their disease, and conducting their own research. Although the use of these tools can be beneficial to patients and clinicians alike, there are a number of misconceptions regarding how the data that are being shared are, and should be, used by third parties (e.g., Clinicians, Insurance Companies, Public Health Agencies, and Pharmaceutical Companies).

PatientsLikeMe (http://www.patientslikeme.com/) is a social networking site aimed at making healthcare better for everyone through data sharing, peer-support, and research. In September of 2012, in collaboration with Consumer Reports and the Institute of Medicine, a survey was fielded on representative sample of US adults who use PatientsLikeMe. Questions ranged thematically from demographics to attitudes and perceptions of data sharing and utilization.

Objective

To explore attitudes and perceptions as to how (and by whom) data shared on social networking sites should be used to improve care.

Methods

Registered members of PatientsLikeMe who had logged into the site at least once in the preceding 90 days were invited to take part in the survey. Iterative pilots were used to optimize messaging and maximize survey response rates. In total, 13,524 participants were invited to take the survey between September and October of 2012, with a single automated reminder message three days after the initial invite. Data was analyzed with IBM’s SPSS Statistics Standard version 20.0.0. No financial incentives were offered respondents for participation in the survey.

Results

2,725 (73.5%) respondents completed the survey. 1,636 (77%) of them were female and 1,417 (52%) had shared their profile with at least one person outside the site (e.g., spouse, friend, clinician, other). Overall, 1036 (38%) and 954 (35%) believed that their data from Personal Health Records would be used to deny them healthcare benefits or would limit job opportunities in the future, respectively. In contrast, 1,553 (57%) of respondents believed that their data was currently being used to improve the care of future patients who might have the same or similar condition.

Conclusions

Our results strongly suggest that American patients are sharing their medical data on social networking sites despite the fear that it may be used against them. Furthermore, the reality and perception of how data are being used are widely disconcerting. Further research will be required to explore whether these attitudes are isolated to the United States or if they transcend geographical boundaries to respondents in countries with universal healthcare systems.

Francisco Grajales III is a Doctoral Fellow in Healthcare, Technology, and Place and an Adjunct Researcher in the Forumclínic Group at Hospital Clínic de Barcelona.

Contact Us

We're not around right now. But you can send us an email and we'll get back to you, asap.

Not readable? Change text. captcha txt

Start typing and press Enter to search