Not-so-sensitive data: The case for unprotected health information

When the U.S. government rallies against an enemy, it often turns to its citizens for help in some way. 

In World War II, Americans were asked to turn over metal that could be repurposed for artillery and ration their gasoline and household staples like sugar and coffee. 

Now, in a war of attrition that has mostly taken place in laboratories and hospitals against foes such as cancer and other diseases, the White House has asked for a different kind of sacrifice. It’s one some Americans would never think twice about giving up, but that others may view as an unacceptable forfeit. 

Uncle Sam wants your health data.

In January 2015, the Obama administration announced the Precision Medicine Initiative, a rallying cry to drive research and treatment of chronic disease. One component of this action plan is the creation of the largest cohort program in the nation's history. It will call for at least 1 million Americans to volunteer their personal health information, including data from electronic health records, genomes and fitness and health tracking devices. Much of this data will be collected in collaboration with hospitals and healthcare organizations. 

But hospitals have contended with privacy concerns stemming from the inappropriate access, sharing or use of patient data for decades. More recently this breach of patient trust has cost providers millions of dollars in HIPAA fines and settlements. But data volunteered as part of the Precision Medicine Initiative study cohort is accessible to the public and would be continually added to the database over the course of a lifetime. Why would patients be willing to share such comprehensive personal health information for a project like this? 

For one, collecting this kind of data from the largest group of people in history would enable researchers to look at genetic variants related to the risk of specific conditions, says Kathy Hudson, PhD, deputy director for science, outreach and policy for the National Institutes of Health.   

"Being able to do that across many, many, many people means you have a higher probability of seeing rare events," Dr. Hudson says. "And rare events can tell you about mechanisms and pathways that can become targets for interventions."

The NIH is hoping to conscript volunteers by having partner healthcare organizations reach out to patients who may opt-in to participate. The NIH is also in the process of setting up an infrastructure that will allow anyone who wants to volunteer their data to submit it. 

"Even people who want to share information for research purposes are still concerned about their privacy," Dr. Hudson says. "Making sure that participants understand we'll do everything we can to make sure their information is secure is an important part of it."

Dr. Hudson says she doesn't think patients' opinions about publicizing personal information public are necessarily changing, but their relationship with researchers is. One recent study indeed found that while patients desire control over who sees their medical information and how it is used, they express a desire for granular control they can use to share certain aspects of their records more openly than others. Dr. Hudson suggests that when a researcher or clinician can explain to a patient why sharing their data would be advantageous to them, or to the community overall, they're more likely to see the value in volunteering it. 

Technology has made data sharing easier on patients as well, and the way people have acclimated to sharing personal information through smartphones and the Internet may offer insight into how patients will adapt to being more flexible with health information in the future. 

John Halamka, MD, CIO of Beth Israel Deaconess Medical Center and dean for technology at Harvard Medical School, both in Boston  has experience with the to-share-or-not-to-share decision process: In 2015, he and his entire family opted to make their medical records and genomes publicly available online. In a column for Politico, he delved into the reasoning and pointed out that having his medical information available for free online automatically alleviated concerns about hospital employees or hackers getting hold of it. 

Although not all patients may be as comfortable sharing as Dr. Halamka, considering his medical background, there are experimental measures that could help people warm up to the idea.

"If you use the [smart]phone as a receiver for healthcare data, then the patient can say, 'I want to be a medical altruist and contribute all of my data to precision medicine research or not,'" Dr. Halamka. "They could choose to send their diagnosis, but not the medication they've been prescribed, or everything but their HIV status."

Dr. Halamka says giving patients control over what is and isn't shared might change their perspectives on just how private health data should be. Telling a patient that their data is going to be used in a clinical trial or put into a database creates a very different scenario than asking them whether they'd be willing to volunteer their data for research. 

"My experience has been as long you give patients a choice, they feel pretty good about it," Dr. Halamka says. "For example, in Massachusetts, we are an opt-in rather than opt-out state. So imagine the difference in the dialogue: 'I'm going to share your data until you tell me to stop.' Or, 'May I have permission to share your data for a certain purpose?' I think patients in general feel the latter is much more friendly. And in effect, what precision medicine hopes to do is enable patients at their discretion to contribute their data for a specific purpose. And I think many will."

The two ways patient health data is exchanged between providers is physician-to-physician, or physician-to-patient-to-physician. More often than not, when hospitals share information in a health record, it's all or nothing. But when that control is transferred to a patient, whether they manage their sharing preferences through a smartphone or some other system, they have a more granular say over what is and isn't shared. 

Dr. Hudson says the NIH plans to confront issues that patients have with privacy as they arise, and they'll learn much more about the reservations patients may have about privacy as the project rolls out this year.

The cost of genomic sequencing has fallen exponentially: In 2010, mapping the genome cost roughly $15,000. In the past two to three years, the cost fell to the $1,000 to $4,000 range, and innovators are consistently trying to develop mapping solutions with the lowest price tags. For example, last fall, one genome scientist made news for developing a $250 test. This means collecting a near-complete picture of an individual's health is becoming a more realistic endeavor in healthcare. The willingness to be more flexible about sharing sensitive data may ultimately be the tradeoff for knowing more about individual health and the health of populations and communities overall. 

If and when the cohort reaches one million people, Dr. Hudson says the size of the group, the fact that volunteer data will be around after the volunteers themselves are long gone, and the diversity of richness of the information collected will provide unprecedented power to ask scientific questions that couldn't be addressed any other way.

Dr. Halamka says he sees differing opinions on personal data privacy as generational, too, which could mean a shift toward more relaxed attitudes is only a matter of time.  

A young adult who uses Facebook, or various other social media to talk about their innermost thoughts and details about their lives, including their health, could very likely grow up to live in a generation where sharing information that was once taboo is completely normal. When younger people who are at lower risk for serious health problems become accustomed to speaking about their health openly, they will likely take less issue sharing more sensitive information in their later years. 

If so, then developing the technology to give patients more granular control over who sees what when could be the ideal solution. But sharing information that ranges from the basic, such as height or weight, to the deeply personal, might just always have to be handled on a case by case basis, Dr. Halamka says.

“I think you have to ask what's the benefit? What's the risk and what are your personal preferences?,” Dr. Halamka says. I do believe that as we move forward, my daughter's generation and beyond people will feel much more comfortable about sharing data because they do it everyday without a lot of negative consequence."

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