Chronic Disease Patients' Top Online Privacy Worries - InformationWeek
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Chronic Disease Patients' Top Online Privacy Worries

Medical data privacy isn't as much of a worry as online banking data privacy for these patients, Accenture study finds.

By a narrow majority, 51% of consumers with a chronic disease say the benefit of online access to their medical records outweighs any security and privacy risk. And while many remain worried, they are actually less worried about healthcare data than about their online shopping and banking transactions, according to an Accenture survey.

The difference in attitudes is interesting but "a lot less different than you would think," says Kaveh Safavi, a physician and attorney who leads Accenture's global health business and is also a periodic contributor to InformationWeek Healthcare. This data comes from Accenture's Patient Engagement Survey, which included more than 2,000 participants in the United States.

While conceding that a 51% majority is not an overwhelming vote of confidence, Safavi said it is encouraging, taken in context. Despite consumer concerns about the privacy of healthcare data, "if you rank ordered them, their concern is a lot less than with the tradeoffs they are already making for online banking and financial services."

[Healthcare consumers are coming. Read Healthcare's Next Phase: Think Amazon.]

Chronic disease patients are slightly less concerned about the privacy of their electronic medical records (65%) than they are about other personal information that is stored digitally, such as online banking (70%), in-store credit card use (69%), and online shopping (68%), according to the survey.

Those who are more seriously ill tend to be less concerned about any perceived privacy risk. For example, 57% of those with cancer thought the benefit of access to their data outweighed the risk, compared with 48% of asthma and arthritis sufferers.

Only 30% of chronically ill people report having accessed their health information online, but that's compared with 24% of healthy people. The biggest barrier to online patient engagement still seems to be education and awareness. Of the chronically ill who had not accessed their records, 55% said it was because they didn't know how. Another 17% said they trusted that their medical records were accurate and saw no need to access them online.

Many patients are also making these judgments without ever having experienced the benefits promised by electronic medical records, holding out hope for healthcare organizations that figure out how to deliver on those promises. "As the value of the transactions goes up, people's willingness to engage will increase," Safavi said.

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David F. Carr oversees InformationWeek's coverage of government and healthcare IT. He previously led coverage of social business and education technologies and continues to contribute in those areas. He is the editor of Social Collaboration for Dummies (Wiley, Oct. 2013) and ... View Full Bio

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User Rank: Author
5/8/2014 | 10:28:35 AM
Re: Majority Rules
@Alison, yes, I agree. It's tough to trust people who prevent you from seeing reports on your own health. And it is important that clear directions be provided about how to access the information.
User Rank: Author
5/8/2014 | 10:23:48 AM
Majority Rules
That's a slim majority by any measure -- but I suggest healthcare organizations have the opportunity to increase that margin by educating consumers on how to access their records; showing patients how to correct any errors that appear in their records, and stating -- in simple, non-legalese, how they use (and don't use) patient data. As we just saw from Facebook/Moves (my story will post on InformationWeek soon), terms and conditions can change fast. That's why patients may be more likely to trust their healthcare provider than a private or public vendor (I know I would). 
User Rank: Author
5/8/2014 | 10:21:05 AM
Re: records
I've spoken to a lot of healthcare organizations about their implementation of healthcare portals and mobile apps but if patients don't know how to access their records, then this investment isn't worth much. I wonder how providers educate patients to ensure they know how to access and use this data, and measure their results. It does appear, at least from this report, there's much more work to do!
User Rank: Author
5/7/2014 | 12:52:35 PM
"Of the chronically ill who had not accessed their records, 55% said it was because they didn't know how."

Clearly, that is the major deterrent, based on the responses here. It's not enough to have it available in theory, people have to be shown how to access it in practical terms. 
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