We asked 7 health IT communications pros: would you share your personal health data?
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As a full-service health tech PR and marketing agency, we run into the issue of personal health information (PHI) a lot! We see how our clients use it; we understand the risks of sharing it, as well as the potential benefits. We asked 7 of our top health IT communications pros to answer this question:
If your personal health information would not be held against you in any way -- in the form of social stigma or higher insurance premiums, for example -- how important would the privacy of your personal health information be to you? Would you share your health data freely with researchers?
"Working in healthcare PR, I understand how important clinical trials are and am aware of some of the unique challenges that patient enrollment can entail. I would opt-in to share my information with researchers as long as my privacy was still maintained. Knowing that I personally contributed to a better understanding of the human body and how it responds to a certain treatment or procedure would be very empowering. However, my personal health information is exactly that – my personal health information. Just because it wouldn’t be used against me in any way doesn’t mean that I want it available publicly." - Heather Kerr, Account Supervisor
"Sure, I would be happy to share my personal health information with researchers as long as it's used properly and not sold to third party companies. If it can help others in some way, I would be all for it." - Stephen Alberts, Digital Marketing Expert
"If this were the case, I would be open to share my health data freely with researchers if I knew it was secure/safe. Despite the social stigma or higher insurance premiums, I think it would still pose a risk for cyber security purposes and hackers to gain access to my personal information. However, if I knew there would be strong security measures to protect my information between researches, then yes, I would certainly want to help benefit the future in healthcare." - Jemma Roche, Marketing Coordinator
"Many advances in healthcare were built on the backs of people who shared their health information willingly or not. It took us nearly a century to go from scribbled notes to usable EHRs. In that time we have made progress in ethical and secure data collection. It seems like we are in a place where we can focus on making data safe, accessible and actionable, respecting the people behind the numbers -- something I would be happy to be a part of." - Arielle Sklar, Account Director
"I've seen the amazing analysis and inferences some of our health tech clients can draw from data, and how it impacts everything from diagnosis to treatment. I believe the main reason that people are not comfortable sharing their health data is because they are concerned with possible ramifications -- from employment to insurance considerations. Unfortunately, experience has taught us all to be cautious with our PHI. Some of the fears may be unfounded with the advent of technologies that can completely de-identify data, but there are still conversations that need to be had. I would love to see us move toward a culture where we are able to share health data freely to advance the common good." - Beth Cooper, Marketing Director
"I'd definitely feel more inclined to share my personal health information with researchers if there was a guarantee that all information remained confidential and utilized just for the purpose of research. However, I would probably remain reluctant due to a fear that my data would be shared with third-party organizations." - Johnny Garcia, Social Media Account Manager
"My personal health information is pretty vanilla, which I guess is good? But, I would be open to sharing my information with researchers if there is a value. I am an organ donor, too, so similar concept to using my body parts for someone else's benefit." - Paul Purvis, Director of Business Development