WASHINGTON –Rebecca Spencer White, from Gilroy, Calif., felt lost when her 4-year-old son Jonathan was diagnosed with the rare genetic neurodegenerative Niemann-Pick type C disease.
She is not alone. Parents whose children are diagnosed with chronic diseases often feel lost. Like many people, she immediately turned to the Internet for support.
“The doctors told me, don’t Google it. But the first thing I did when I got home was Google it,” she said. It was such a rare disease, she found nothing online about it.
Five years have gone by, and a lot has changed. More information is available, and thanks to social media, Spencer White is now master of her son’s fight against the illness. She raised $100,000 to pay for medical treatment by using social media.
Monday’s National Institutes of Health Digital Summit brought together people from the health-care field to paint a broad picture of how digital tools can be used to better reach patients, scientists, clinicians and the general public.
Like Spencer White, parents turn to social media to raise money. But perhaps more important, social media has enabled people with the same illness to share information and stories with each other.
Niemann-Pick type C causes cholesterol to accumulate in the liver and spleen. There is no cure. Those with the illness rarely live past age 10. Jonathan, now 9, is doing well. The mother-son duo flies to the NIH every three weeks for Jonathan’s treatment in a clinical trial. This week, things were different. Spencer White was invited to speak at the NIH about how she used social media to educate herself about taking care of her son.
Patients and caregivers seek out others online, not just to learn about clinical research, but also to find out what it is like to live with a particular disease, Anna McCollister-Slipp, founder and CEO of Galileo Analytics, said. She has been a diabetes patient for over 30 years.
“Social media is giving people the ability to empathize with others,” she said.
For Guy Anthony, author of “Pos+tively Beautiful” and an HIV patient, digital tools have tremendous potential in raising awareness and providing reliable and fast medical support to patients.
“I absolutely love Kaiser because I can literally open up my phone, send my doctor a message and, in real time, I get a response,” he said.
Kaiser Permanente’s mobile app allows caregivers and patients to manage their health from their phones – from doctor-patient communication to reminding users of medical appointments and making electronic health records easily available.
While it seems easy for patients to look for medical information and peer support online, federal agencies seem to have a hard time reaching the public. The solution: create more engaging content.
“It’s not about the channel. It’s about the engagement,” Erin Edgerton Norvell, founder and principal strategist at Digital Edge Communications, said.
Edgerton Norvell said health-care communicators need to share stories to build relationships with those they are trying to serve and to add information in small increments.
“When you string enough pieces of engaging content together, that’s when you get real deep customer engagement,” she said.
Once this level engagement is developed, it is crucial for health-care communicators to be able to maintain this relationship, Erik Augustson, program director of the Tobacco Control Research Branch of the National Cancer Institute, said.
His team is trying to find ways to get people to find information and use it to change the way they deal with disease.
“It turns out that it is massively difficult to get people to change their behavior pattern around a social media app,” he said.
This is because health-care communicators often don’t know who they are trying to reach and what the most relevant, intelligible way of communicating health information is.
There are some success stories.
The SmokeFree initiative sends text messages to registered users to help them quit smoking.
Even though 50 percent of the participants drop out because smoking is addictive, those who signed up were two or three more times more likely to quit than those who tried on their own, Augustson said.
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