Social Media Users Willing To Share Health Data Despite Concerns About Privacy

Janet Freeman-Daily writes a blog about lung cancer. As a former aerospace systems engineer with a degree from MIT, Freeman-Daily uses her blog, "Gray Connections," to describe scientific information in less technical terms for patients with lung cancer. It's also a forum in which she can share her personal experiences as someone who had been diagnosed (in 2011) with stage 4 lung cancer. She describes the purpose of her blog this way: 

"This blog is a place for me to capture new science and technology developments in fields that interest me, which include lung cancer (which I have), the brain (which I used to have), dementia, memory and autism. I'll also include notes about my writing, health, travels and anything else I find particularly intriguing. I confess, I'm a curious geek. EVERYTHING techie intrigues me! I'll blog about all of it eventually, hopefully with humor.

Freeman-Daily's decision to share her experiences with a wider audience didn't come easily.

"I had to think long and hard about whether or not to go public with my lung cancer," she said.

Part of what propelled her to eventually step into the public eye had to do with her particular diagnosis and the need she felt to provide education in a way that was otherwise being overlooked.

"It's got a strong association with smoking," she said of lung cancer. "The public health organizations and the surgeon general did such a good job convincing people that cigarette smoking can cause lung cancer that now the public thinks all lung cancer is caused by cigarette smoking, and it's not."

This, she said, often results in patients being blamed for their illness. Freeman-Daily was never a smoker and wanted people to understand that anyone can get lung cancer.

That, combined with her perception of a lack of online patient forums focusing on lung cancer won out over her concerns about privacy, and she started the blog.

Freeman-Daily's response to sharing medical information online reflects the attitude many people with rare and complex diseases seem to have according to the findings of a recent report by the Institute of Medicine.

The report, titled "Social Networking Sites and the Continuously Learning Health System: A Survey," is the discussion of two online surveys -- one conducted by a research arm of the Consumer Reports National Testing and Research Center and the other by PatientsLikeMe, a for-profit social networking site that shares data, offers peer support and facilitates transparent research.

It found that 94% of social media users with medical conditions said they would be willing to share data about their health to help doctors improve care. The same percentage -- 94% -- said they would do so to help other patients like them.

Of social media users with medical conditions:

  • 92% supported sharing their health data anonymously to assist researchers to learn more about their disease;
  • 84% said they would be willing to share their information with drug companies to help them make safer products; and
  • 78% said they would share their information to let drug companies learn more about their disease.

Despite the high percentage of patients willing to share their health data to advance medical care, many expressed fairly serious concerns about how their information would be used.

In fact, 76% said they believe that data from their personal health records might be used without their knowledge. Meanwhile, 72% said they believe their data could be used to deny them health care benefits, and 66% believe it could be used to deny them job opportunities.

Why, then, would patients with such serious privacy concerns want to share their medical information?

"I can summarize this as most patients think there's a possibility their personal health data could be used against them, but when they see the benefits, they do it anyway," Paul Wicks, vice president of innovation at PatientsLikeMe, said.

Wicks said, "You probably know that using online banking increases the likelihood that a hacker could claim your identity ... but I would say now that you've realized the benefits of it, I think it would be very hard for me to get you to go back to just using the ATM."

The high percentage of patients willing to share very personal medical information despite privacy concerns doesn't surprise David Harlow, principal of healthcare law and consulting firm, The Harlow Group LLC, and author of "HealthBlawg."

 "We're talking about people who have experienced a variety of rare medical conditions who understand the importance of sharing information from patient to patient," Harlow said. 

Many people, according to Harlow, understand that sharing may come with some costs and risk.

The bottom line, said Wicks, is that people with a life-altering or terminal illness will make very different tradeoffs in terms of the risk/benefit of how much of their information they're willing to share, compared with healthy individuals.

Another interesting finding from the report is that two-thirds of those surveyed believed that their health data were currently being used to help inform the care of future patients.

"The concept would be that if I go to the doctor tomorrow and get diagnosed with testicular cancer, everything that's about to happen to me will be informed by the decisions and the journey of every patient who went before me. That's what a true learning health care system should do. That system does not exist right now," Wicks said.

Protecting Privacy

There is a lack of understanding on the part of patients about how their digital information is used by third parties, according to the report. The authors point out that although patient-informed consent must be obtained before researchers are allowed to use the data shared on medical social networking sites, marketers are bound by no such requirement. And social media sites, unlike health care providers, are not bound by HIPAA.

Freeman-Daily said she frequently sees the effects of this online. In addition to writing her blog she actively participates on other online lung cancer forums, and while they provide her with a much needed space to share and obtain information about her disease, she has major privacy concerns.

"You have no idea who's listening in. You have no idea who's signed on. Anybody can join. So I have no idea how my information is being used," she said.

And, that gets to the real heart of the matter: control, said Brian Loew, CEO of Inspire, a company that builds and manages online patient support communities.

"When people say they care about privacy, I believe what they really mean is they care about control. Privacy doesn't mean locking things up and never sharing them. It means that when it comes to information about you, you want to be in control of when it's shared, and how and with whom," Loew said.

As our lives are increasingly lived online, the concern about the security of our data and the possibility of them being used in ways we didn't intend also increasingly grows.

"There's clearly a lot of work to be done in terms of maintaining and improving people's confidence in the hubs that can be used for sharing of this information," Harlow said.

Source: iHealthBeat, Monday, March 10, 2014

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