Patients, caregivers laud benefits of social media, other digital tools in managing health conditions

A panel of patients as well as a caregiver at the NIH Digital Summit on Monday detailed their experiences in using social media and digital tools in learning about health conditions and how to manage them.

Through their different experiences, the three panelists expressed ways in which they were able to educate themselves and connect with others.

"We have been coming to the NIH for 5 years," said Rebecca Spencer White, whose son has Niemann-Pick Type C. "When Jonathan was 4 years old, he was diagnosed with Niemann-Pick Type C disease, which some refer to as childhood Alzheimer's. It's a neurological disorder. I remember when he got tested, the doctors told me, 'don't Google it because you don't want to read about this disease.' Well the first thing I did when I got home was Google it."

She explained that friends helped her find parents of other children with the disease online, which led her to the NIH. Now, White uses social media avenues such as Facebook, Instagram and blogging in a variety of ways for her son and his treatment.

"We use social media in a huge way," she said. "I had to convince a little boy to get spinal taps, to get blood draws, to have all this stuff done to him and we use social media as the children's in to show the positive for it."

Her family also uses social media as a positive for other kids and for clinical trial recruitment by sharing updates on a page for Jonathan.

"Sometimes, I know it might scare families, I might share too much, I might share too little." White said. "It's our way of connecting."

She also said that that an online community of parents is a great support network.

"Now, if I have questions, I'm going to talk to other parents more often than I'm going to talk to doctors," White said. "Social media is huge in that aspect."

Guy Anthony, author of Pos+tively Beautiful, said that he also used "Dr. Google" when he was diagnosed with HIV.

"I was the first person I had ever met with HIV," he said. "I had no one to turn to. Even the clinic that diagnosed me was unsupportive. I was a recluse for about 5 years. I did research here and there, but the only knowledge that I had of HIV was that you get sick and you die."

Anthony said that he used crowdfunding and Facebook for support, which led him to future social media endeavors.

"Now, I blog for AIDS.gov and poz.com," he said. "AIDS.gov keeps me in the loop on everything HIV-related and poz.com keeps me in the loop with people who are going through the same thing I'm going through."

Even though HIV is very stigmatized, Anthony said, it doesn't keep him from being active online on platforms like Facebook, Instagram and Twitter, in addition to his blogging positions.

"It's because that I'm so transparent, that I'm saving so many other people that had never really seen anyone that looked like them," he said. "The more people are talking about it, that level of secrecy is shedding and that stigma is dropping off. Whenever I get the chance to talk about HIV and how it's affecting me and my community, I'm always front and center because that's the only way we can eradicate this disease."

Anna McCollister-Slipp, founder and CEO of Galileo Analytics, said that while the Internet did not exist when she was first diagnosed with diabetes, digital tools have always played a role in her health decision making.

"I have had type 1 diabetes for 30 years," she said in the panel. "As such, I have been using digital health and digital tools to inform my health decisions about a potentially fatal, very dangerous drug — insulin — for more than 30 years. I consider myself and others with type 1 diabetes, specifically, as digital health natives. We intuitively understand how digital tools and medical devices are an incredible part of both informing care and choices in life and helping us understand what really matters in terms of what impacts our health."

McCollister-Slipp said that she now uses Facebook, Twitter, Github and Google Groups to help manage her disease.

"As technology has improved, those of us in the type 1 diabetes community have taken to these means of communicating, of connecting, of sharing information — not just about our experience with the disease, but how that is translated in data, data that we generate 24/7 using blood glucose meters and continuous glucose monitors and other tools critical for understanding patterns," she said. "Diabetes is a 24/7 disease. It can very easily be fatal or debilitating, even if you're doing absolutely everything right. Digital tools and the advent of digital health have been critical, life-changing and life-giving to those of us with diabetes."

Responding to a question about the possibility of judgement from outside audiences and HIPAA law when posting online about a health condition, McCollister-Slipp said that HIPAA has become an excuse and a barrier.

"Concerns about HIPAA, to me, are overblown," she said. "I think the most critical thing from my perspective — personally and speaking with other patients — the biggest concern and barrier was around discrimination. Now that we have the Affordable Care Act, and now that it's illegal to discriminate against those of us with pre-existing conditions, I think it's much easier to talk about these issues openly and publicly."

She acknowledge that there is still a risk.

"There is a concern about those of us with diabetes and our ability to be productive and contribute," McCollister-Shipp said. "That is a risk that I chose to take. It's a huge risk, but I feel like not talking about these issues has allowed individuals to pretend that life with diabetes is easy, that insulin is a cure, that once you have insulin in your system, it's very easy to manage. It is not. Not talking about it contributes to lack of awareness and ignorance about life with diabetes." – by Chelsea Frajerman Pardes