Get Privacy Right, So We Can Move On Already


A national survey released today by the California HealthCare Foundation shows that 66% of Americans believe we should address privacy worries, but not let them stop us from learning how technology can improve our health care. Amen.

This is particularly heartening news given that the same survey also documents for the first time real consumer benefits from the use of personal health records (PHRs). Seven percent of American now use PHRs, more than double the number in 2008. According to the survey, significant proportions of PHR users feel they know more about their health and health care, ask their doctors questions, feel connected to their doctor, and even take action to improve their health as a result of using a PHR.It gets better. Though current PHR users fit the profile of early adopters of technology in general (wealthy, highly educated, tech-savvy men), it’s the less privileged that report the greatest benefits.  People with multiple chronic conditions, low incomes, and less education are among those most likely to take steps to improve their health as a result of using a PHR. Given that chronic disease accounts for about 75% of the $2.3 billion our nation spends on health every year, that’s a big deal. As economist Jane Sarasohn-Kahn remarked on the findings, PHRs may be able to “bend the cost curve”—if enough people with chronic conditions improve behaviors just a little, they could save enough to repay all $46 billion that the Stimulus Package is putting toward health IT through HITECH.

Consumers Are Headed in the Right Direction

A 2005 California HealthCare Foundation survey found that 67% of Americans were concerned about the privacy of their personal medical records—about the same as today. But the new survey also compares people who are using PHRs to those who aren’t. PHR users are a little less concerned than non-users about the privacy of their health information overall. And only 40% are worried about the information that is actually in their PHRs. Why? There are several possibilities, but it could be in part because familiarity with the tool brings comfort. Before ATMs were commonplace, lots of people were unsure about getting cash through a hole in the wall.

While it’s true that people who don’t use PHRs cite privacy as a top potential barrier (followed by no perceived need), 40% of non-users say they want to use a PHR anyway, and more than half are interested in remote monitoring devices and other health applications. That’s pretty significant when you figure that a large proportion of people consider themselves healthy (and are thus not interested in tracking their health).

The survey also points the way toward greater adoption by asking non-users what factors would contribute to their use of one. Reports include knowing that it comes from a trusted source, strong laws and fines for misuse of information, and encouragement from their doctor. It’s also notable that those whose doctors use an electronic medical record have a higher level of interest in using PHRs—so perhaps the HITECH support for EHR adoption will help tip the balance for PHR adoption, too.

Where Policymakers Need to Go

Privacy is sometimes cited as a–or even the–primary barrier to health IT adoption, and people are concerned about it for good reason. Discrimination, embarrassment, physical harm, and avoidance of needed health care services are among the risks associated with getting it wrong.

But there are some good ways to mitigate privacy risks, including both technical and policy approaches. Among recommendations the California HealthCare Foundation has articulated:

* Congress should develop consistent PHR privacy safeguards (which would include PHRs not covered by HIPAA)
* The Administration should ensure that there is rigorous enforcement of current health privacy rules (HIPAA is notoriously under-enforced)
* The Department of Health and Human Services should raise public awareness of PHR benefits and risks.

This last point is essential because consumers need to consider privacy risks in the greater context of health IT benefits, yet most know very little about either. Again, it’s not that privacy is not important—rather, it’s imperative that we get it right so we don’t forfeit the many benefits of health IT. The new survey helps to document some, but I suspect we’ll see more evidence that health IT can improve the quality, efficiency, and convenience of care, even saving lives.

Lygeia Ricciardi is the founder of Clear Voice Consulting (www.clear-voice.com) and part of the leadership team of Clinovations (www.clinovations.com). Though the views above are her own, she worked closely with the California HealthCare Foundation on shaping and interpreting the survey described above. Follow her on Twitter @Lygeia

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10 replies »

  1. The ideas you discussed here are incredibly useful. Rrt had been such an exciting surprise to have that looking forward to me as i woke up now. They are continually to the point plus easy to grasp. Warm regards for the clever ideas you’ve shared here.

  2. The problem with technology and privacy, is when tech software programs are developed, they are able to handle massive amounts of personal data. Great right, well, when security is breached, or firewall problems occur, this massive amount of data is subject to disclosure.
    On the other hand with paper flow, the data is much safer, although so slow for physician and hospital access. I don’t see any perfect system.

  3. I am in favor of electronic medical records and think that PHRs that patients can access are also a good idea. Conceivably, patients could carry their records with them (for example: in a bracelet) so that if they arrive in the ER, their complete records come with them.
    But security issues are not trivial. Every couple of months you read about some kind of major security breach of confidential information; government laptops containing various records being lost, people hacking into websites, etc. With paper records someone who steals a record gets one. With a database of electronic records – such as those maintained by employers, hospitals, pharmacies – a hacker can “score” thousands of records.
    And for those who don’t believe it will happen – I have a bridge for sale.

  4. Oops, read the posts in the wrong order. Now I know what PHRs are. I still think a definition of an acronym should be included at the beginning of an article – like this article did.

  5. Unfortunately, Michelle, you are probably correct. They don’t install traffic lights at railroad crossings unless somebody gets killed first, preferably a cherubic toddler.

  6. I think the author is correct in the sense that the march toward IT engagement in all aspects of life is pretty inevitable at this point: not just because of federal mandates like HITECH, but because we as the consumer will demand it and the services it offers. There is no turning back, short of a nightmarish apocalypse of the world as we know it. Privacy certainly seems to be of little concern to most users of Facebook.
    But I think that the forward march will be checked in places, not by regulation, but litigation. Currently the author cites PHR users as 7% of the US population, far less than those using credit cards. Once that number swells into a number big enough to attract criminal attention and class-action lawyers, there will be a court case that awards huge damages due to privacy infringement/discrimination/etc, which will shake the industry and cause changes to how PHRs/EHRs do buisness.
    I could be wrong, but that seems to be how most issues are settled in the US. The Supreme Court will ultimately have to decide how far privacy stretches.

  7. Oh but if we get Privacy right, there will be no “free” PHRs out there, would there?
    Why would anybody create tools and services and let anybody use them for “free” unless, of course, there was another way to monetize all that data? And, no, de-identification does not make me feel all warm and fuzzy and HIPAA does not protect anything that is not immediately identifiable and neither do any of the HHS proposals (discussed here http://bit.ly/bKieMI ).
    I just wonder if the respondents of that survey had the prerequisite knowledge and understanding of how their information gets bought and sold, and by whom, and for what purpose…..
    Note: Patient Portals (integral part of an EHR) are a different story altogether.

  8. We’re publishing an article in Health Affairs this month about including patients’ perspective in Meaningful Use criteria for EHRs – that would go a long way to ensuring access to information and would help ensure that patients benefit from that access.

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