NIH: Use of digital tools, social media bridging research-health gap

Print 28 October 2015
Nuala Moran / BioWorld

People managing chronic conditions and rare diseases are the "alpha geeks" who epitomize how digital communications channels and social media can be best used to promote the NIH's goal of translating discovery research into health.

They are "pushing on all the tools" and can "show the way on where things are going," in using digital technologies to communicate science so that the American public can benefit from research, said Susannah Fox, chief technology officer of the Department of Health and Human Services, opening NIH's first Digital Summit on Monday.

In the past, there have been long lead times from discovery of potential new treatments to adoption; now it is possible to inject information and lift the barriers between discovery and practice, Fox told delegates. With nine out of 10 Americans having access to the internet, it has become an "information vending machine." The general public can retrieve "industrial-strength" data, where previously only a "filtered drip" was available.

The rise of the smartphone is putting the internet in people's pockets and amplifying that effect. Many in the U.S. are abandoning landlines and in five years the majority of households will be "mobile only." Accompanying that, six in 10 adults are now users of social media, Fox noted.

NIH's public access policy aims to promote availability of all the research it funds by requiring journal papers reporting results to be published on open access platforms. In parallel, there are moves to give patients access to online primary care electronic health records.

"We are using [digital] tools already, but we need to push ourselves further," Fox said. "How might we use social media to open even more doors and windows into our research; how can we encourage even more engagement?"

Fox pointed to the way in which Centers for Disease Control and Prevention publications on the Ebola epidemic were picked up and disseminated through Wikipedia, with contributors to the free online encyclopedia translating the information into other languages. She suggested that could provide one model for freeing up knowledge generated by NIH and making it available worldwide.

Virtual reality also could be an important tool, giving researchers greater insight into what it is like to live with a long-term condition. "It is a tool for empathy – for understanding someone's real life experience," said Fox. That could be applied to improve the design of clinical trials.

Social media can be used to transmit information to patients, but it also provides a means for researchers to tap into a "wellspring" of patient and carer data.

PATIENT POWER

Alpha geek patients and carers gave delegates their view of the impact of digital tools and channels and how NIH might best deploy them.

People with long-term conditions have taken to social media to share information, said Anna McCollister-Slipp, founder and CEO of the health data analysis company Galileo Analytics, who was diagnosed with type 1 diabetes 30 year ago. "We intuitively understand how digital tools inform care and choices in life and help us understand what really matters in terms of the impact on health," she said.

That provides greater insight into diabetes than the partial information handed down through official channels. "Not talking about issues has allowed people to pretend life with diabetes is easy – it's not; there are a lot of deaths from hyperglycemia," said McCollister-Slipp.

She suggested that NIH should explore ways of using social media to roll information out to patients' groups, as a way of speeding up recruitment to clinical trials. While Clinical Trials.gov is a great resource, it is a static repository. Potential recruits must keep going back to the site the check for new studies. "Not many people are looking at it," said McCollister-Slipp. Social media platforms could provide a better way of disseminating the information.

When Rebecca Spencer White's son was diagnosed with the rare inherited lysosomal storage disorder Niemann-Pick at the age of 4, doctors warned her not to search for the condition on Google. In fact, it was the first thing she did, and the search engine has proved a valuable source of information.

"The internet was huge for us when we got the diagnosis. Within a day we found other people with Niemann-Pick," Spencer White said. "We support each other through social media: I'm as likely to call another parent as calling a doctor."

Spencer White's son is taking part in the phase I trial of Vtesse Inc.'s cyclodextrin, which is being conducted by the NIH. The study needs to recruit 51 subjects, but with only an estimated 500 patients worldwide, and other treatments in clinical development, that is difficult.

Spencer White has played her part in using social media to promote the '51 and Done' campaign to help in recruitment to the phase I. "I write down what is going on in the trial on Facebook. It's not a blind trial; I share everything," said Spencer White. In addition to highlighting the positive aspects of taking part in the study to other potential recruits, the blog has become a resource for her son's doctors. "They can find out things we forget to tell them," she said.

However, the NIH's Fox acknowledged clinicians are not necessarily so accepting of the rise of patient power. They need to appreciate that information flowing from patients can inform and improve their own research. "It's an opportunity for clinicians to really understand better, for example, why patients are not taking their medication; and to design better protocols," Fox said.

McCollister-Slipp agreed the social media movement around diseases can be difficult for medical professionals and the pharmaceutical industry to accommodate. There is a tendency to want to own the communication, but that dilutes the impact.

"Community networks are effective because they are real; you've got to work with them and use them as vehicles to communicate in a way that is relevant," McCollister-Slipp said.

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