The MedHelp Perspective on Patient Data & Privacy

The “Data Privacy & Security” event organized by Health 2.0 SF Chapter on Tuesday, March 19, brought together a diverse panel to tackle the problem of how to maximize the benefits of health technology while striking a balance between privacy and the value of sharing health information.

I was particularly intrigued by what John de Souza, President & CEO of MedHelp, said about the power of patient communities. He shared compelling anecdotes to illustrate the value of sharing patient information within relevant contexts.

I caught up with de Souza a couple days later to further tap into his experiences of leading MedHelp, one of the biggest and oldest (since 1993) online patient communities, as well as to collect more of his compelling anecdotes.

To illustrate the value of tracking data, de Souza started off with a personal anecdote. While running, he often got out of breath and felt like he would collapse. His doctor’s answer, “You’re getting older and should stop pushing yourself so hard,” didn’t satisfy him. After analyzing his data, he learned that this happened only when his heart rate reached over 180 and it was cold outside. Thanks to this, his doctor diagnosed him with a type of asthma.

To illustrate the value of plugging personal data into a patient community, de Souza shared another personal anecdote. He was examined by three highly recommended doctors when he tore his meniscus. “You’ll never be able to run or play squash if you don’t get surgery,” all three doctors told him. He went online for more options and a member told him to see a physical therapist. After eight months of following his physical therapist’s training, he recovered 100 percent.

Collecting data is powerful both on the individual level and on the population level. “Clinical studies do a lot until a drug or therapy is approved. Little is done to monitor effectiveness after that happens,” de Souza said. Post clinical studies, patient communities keep collecting data.

Close to 70 percent of members make their information public on MedHelp, de Souza said, because they’re in populations that are similar to them and they see the value. MedHelp members benefit from each other as well as from a network of medical professionals.

Two examples illustrate how members benefit from each other on MedHelp. One member posted a photo of her daughter’s red eye in a forum. Another member noticed a white spot in the red eye and advised the mother to take her daughter to a doctor. Her daughter was diagnosed with cancer in her eye. Thanks to a timely removal of her eye, she survived.

In another case, a member complained of eye pain in a forum after visiting the hospital and being sent home. A membered warned her that her optic nerve could die and she could go blind in her eye if elevated pressure was causing the pain. She returned to the hospital to check pressure in her eye. Sure enough, she had elevated pressure in her eye and was prescribed medications to control the pressure.

Two examples illustrate how members benefit from a network of medical professionals on MedHelp. A cardiologist looked at the heart forum and discovered a correlation between health palpitations and menstrual cycles. In another forum, an ophthalmologist discovered that a certain type of lens was rejected over 50 percent of the time in lens-replacement surgeries.

The number one question on our website is, “Am I normal?” de Souza said. For example, if I’m using an asthma inhaler all the time, what is happening around the country that is relevant to me? “From the start, MedHelp was built on user engagement and the believe that an outcome depends on the journey. If you can change the journey, you can change the outcome,” de Souza said.

More damage can be done when financial information is leaked than when health information gets into the wrong hands, de Souza thinks. In addition to feeding data back to its members since the beginning, MedHelp has recently released an API that exposes a lot of the data it has collected over the years. MedHelp hosted a hackathon to promote the creation of applications that make use of this data.

Businesses keep people’s data under the pretext of privacy, de Souza said, and people should own their data and have the freedom to control their data as they wish. “I would love to see easier data transfer in health care. What bothers me is that a lot of institutions don’t think that we’re responsible enough to handle our own data,” de Souza said.

Maria Karpenko is the Editor-in-Chief of Lace Express, an international speciality magazine. Maria holds a Master of Liberal Arts in Journalism from Harvard University and a Bachelor of Science in Biomedical Sciences from the University of Waterloo. Maria is passionate about entrepreneurship at the intersection of healthcare and technology. For a portfolio of Maria’s work, please visit her website: