Almost 90 percent of Americans say they would make their personal health data available to researchers to help them better understand a disease or to improve care and treatment options, according to a survey of 1,001 Americans over the age of 18 conducted by research firm Kelton and healthcare communications firm Makovsky Health.
Within this group, 26 percent of consumers would share regardless of whether data were anonymous, 23 percent would share if they could control which data were anonymous, and 40 percent would share if promised that all data would remain anonymous.
The survey also found that around 35 percent of consumers would trust a disease website sponsored by a pharmaceutical company, but 16 percent said they would never visit a disease website sponsored by a pharma company. The percentage of people who said they would reject a disease-specific website sponsored by a pharma company also dropped, the survey reports. Just last year, the percentage of people who would never visit a pharma-sponsored website was 23 percent.
For those that would be willing to visit a website sponsored by a pharma company, 55 percent of respondents would be motivated to do so if a healthcare provider recommended it, 35 percent would do so if a peer recommended it, and 27 percent would do so if a news article mentioned it.
The survey also found that the percentage of consumers using a desktop computer to access health information decreased from 83 percent in 2013 to 69 percent in 2014. Predictably, the percentage of those who used a smartphone to access the health information increased from 6 percent in 2013 to 19 percent in 2014. When asked which sources consumers used to get health info, 62 percent said WebMD, making it the most popular online resource. After WebMD, 25 percent said Wikipedia, and then 16 percent said "advocacy group websites" such as the American Heart Association or American Cancer Society.
The Kelton and Makovsky data shows similar results to a survey from PatientsLikeMe released in January 2014. That survey of 2,125 adults found that 94 percent of adults would be willing to share their health information on social media if it helped doctors improve care, even though a majority of those surveyed also understand the data could be used negatively.
There are two big differences, however, between how the studies were conducted. One, the percentage of people willing to share their health information in PLM survey might be as high as it is because the respondents are already part of PatientsLikeMe, which is an online health data sharing platform. And also because they therefore likely have a health condition. The other important procedural difference is that in the Kelton and Makovsky survey, the respondents were given the option to anonymize their data, and over half of the participants took it.
Just four months after PatientsLikeMe published the results from their survey, the company announced a five-year agreement to share data with Genentech, a division of Roche, its most wide-reaching pharma partnership yet.