Patient Data Sharing: The Public’s Opinion
-Jarrett Lewis and Nathan Bays
“Our privacy is being attacked on multiple fronts” — Tim Cook, June, 2015
Over the last few years, data privacy has emerged as a highly covered and widely debated issue, both domestically and abroad. Cambridge Analytica, Europe’s sweeping privacy laws, and the announcement that 48 state attorney generals are investigating Google for practices that include misuse of consumer data are just a few representative examples of an issue that will continue to grow in importance to society and policymakers. As the health care sector increasingly explores data-sharing partnerships and opportunities, the debate around privacy will be paramount.
In just the last few months, health information technology (IT) giant Epic announced a research initiative to gather the records of 20 million patients, UnitedHealth Group acquired patient social networking site PatientsLikeMe, ProPublica discovered unprotected medical records (including X-rays, MRIs, and CT scans) of more than 5 million Americans on the internet, and the University of Chicago and Google were sued over the sharing of hundreds of thousands of patient records (the two organizations recently moved to dismiss the case). In September Google transitioned DeepMind — an artificial intelligence subsidiary that raised serious patient privacy concerns in the U.K. — under its full control. The U.S. Department of Health and Human Services (HHS) is in the process of finalizing rulemaking that will improve and increase the exchange and interoperability of health information and patient electronic health records.
Increased data sharing in the health care sector isn’t in question — it is a certainty. However, it is not without significant risk. Reduced personal privacy resulting from the use of digital technology in our daily lives — including within health care facilities, in communication with our clinicians, and in other forums — is a given. However, health sector stakeholders must be proactive in establishing meaningful and thoughtful data use and sharing protocols. Beyond established — and clunky — frameworks like the Health Insurance Portability and Accountability Act (HIPAA), acceptable use of both protected health information (PHI) and other clinical/non-clinical data remains largely ill-defined. Policymakers, regulators, consumers, and industry stakeholders are increasingly growing concerned, with significant implications for health sector stakeholders.
In August, Public Opinion Strategies examined this issue from a consumer perspective, fielding a national survey of 1,010 adults to measure opinions on data privacy and data sharing across the health care sector. This brief explores how Americans feel about a relatively new concept — one that holds both the promise of clinical advances through meaningful data exchange and the risk of backlash and reputation damage if done without regard for patient privacy.
Uncertainty About Personal Medical Data Sharing
More than a quarter of Americans believe that their personal medical data has been shared without their knowledge (more than 40 percent are unsure whether their data has been shared).
Men, millennials, higher-educated individuals, and those with private coverage are most likely to believe their data has been shared. Most interestingly, individuals who live in a household where at least one occupant works in the health care sector (either the survey respondent themselves or a family member) are much more likely to believe their medical data has been shared without their knowledge. When asked who is the most likely to have shared their medical data, a plurality (66 percent) answered health insurers, followed by hospitals (52 percent).
Medical Search/Browsing History from Mobile Applications and Websites
One in two Americans believe the mobile applications they use and websites they visit share their medical search and browsing history. Men, millennials, and higher-income individuals are more likely to believe their medical search/browsing information is shared. When asked with whom their medical search/browsing information is shared, 63 percent believe it is shared with technology companies, 58 percent answered health insurers and 49 percent believe their medical search/browsing information is shared with social media companies.
Americans appear to expect that much of their digital information is not well protected, even shared. But there is sensitivity to the practice when it comes to health care. A July Politico-Harvard T.H. School of Public Health national survey found a majority of Americans who have searched for health information online worry their search history will make it more difficult to receive medical care, while fifty percent believe their search information could adversely impact their ability to get a job or health insurance.
Also, nearly 50 percent of Americans have noticed digital advertisements for a health condition they have. Individuals with private coverage, especially those who are self-insured, are among the most likely to have been targeted (interestingly, less than 30 percent of uninsured individuals have noticed advertisements). More than 60 percent of those who have been hospitalized in the last few years have noticed digital advertisements targeted to them.
With Whom Are Americans Comfortable Sharing Their Data?
Survey respondents were asked with whom they feel comfortable sharing their personal medical data. There is a high degree of comfort in sharing medical data with doctors, but support for sharing drops precipitously after doctors. There is almost no support for sharing personal medical data with technology and social media companies. Interestingly, there is also very little support for sharing personal medical data with hospitals that individuals have not visited — support for sharing data with other hospitals ranks below support for sharing data with both drug companies and the government.
Again, there is a stark difference in overall support for sharing personal medical data between those who live in a household in which someone works in the health care sector and those who do not. Those who live in a house where at least one occupant (either the survey respondent themselves or a family member) works in the health care sector are significantly less likely to be supportive of sharing personal medical data with the above groups.
Expectations Around Data Sharing
More than three-quarters of Americans believe health sector stakeholders who share personal medical data without their consent should be penalized. More than seventy percent say they would consider changing providers if their doctor/hospital shared their personal medical data without consent. While it is unlikely that 7 in 10 patients will actually leave their provider over the sharing of personal medical data without consent, the one-sidedness in the response to the question illustrates increased sensitivity and ramifications around sharing of personal medical information by health care providers.
Americans do, however, want their personal doctor to have access to their own unique health data. More than 7 in 10 Americans say they want other doctors they visit to share their medical data with their primary physician.
When it comes to the government role around allowing people to share their personal medical data, Americans are sharply divided. 41 percent believe the federal government should restrict how personal medical data is shared, while 38 percent believe there should be no restriction.
Expectations Around Data Selling
While the idea of compensating individuals for their personal data is relatively new, it is gaining traction, recently receiving support from California Governor Gavin Newsom. While it is unlikely that wide-ranging compensation for PHI or other health data will occur any time soon, it is an issue that will continue to receive attention.
Despite burgeoning interest from policymakers, Americans are concerned about individuals selling or receiving compensation from the use of their health data. Only a slim majority of respondents believe patients should be allowed to sell their medical data. Views are much stronger when it comes to the issue of health care stakeholders profiting from patients. When it comes to the issue of providers selling patient data, Americans strongly believe individual patients should receive compensation (78 percent). They also strongly believe the federal government should be able to regulate and restrict how doctors share patient data (74 percent).
The views from survey respondents related to the commercialization of health data reflect broader sentiment around data privacy. An NBC News-Wall Street Journal survey from March found that more than 9 in 10 Americans believe that any company that operates online should be required by law to get permission before sharing or selling access to a consumer’s personal information and online activity.
Concerns Over How Personal Medical Data Will Be Used
“Who is going to use my data?” and “How will it be used?” are often the central questions that fuel consumer concerns with data privacy, and it is no different in health care. When asked who they are most concerned with using their medical data against them, a plurality (28 percent) say health insurance companies. After health insurance companies, it is non-health care entities with whom Americans are most concerned using their data against them, including the government and technology/social media companies.
Though there are concerns with provider data sharing, Americans have little concern over providers using medical information against them.
However, concern over privacy and security can still impact the patient/provider experience. There have been several surveys that show how concern over medical record privacy can impact the willingness of patients to be fully transparent with a health care provider.
Skepticism That Patient Data Sharing Will Improve the Health Care System
When asked about the impact of increased patient health data sharing, Americans are overwhelmingly pessimistic about the behavior it will incent. More than 8 in 10 believe that increased data sharing will lead to more data breaches/attempts by hackers to steal patient data and insurer steerage/reduction in choice. Three-quarters believe costs will increase for unhealthy patients, while just 25 percent believe costs will decrease for healthy patients. Finally, two-thirds believe an increase in the exchange of patient medical data will lead to the federal government monitoring Americans’ medical history (captured by a focus group respondent who, in taking part of a 2016 Pew Research Center study on the issue of data privacy, said, “Orwell was a prophet.”).
Americans are also less hopeful about the long-term result of medical data sharing. Just one-half of Americans believe providers will be able to identify disease outbreaks faster and only 4 in 10 believe there will be an increase in medical breakthroughs. Perhaps most stunningly, just 1 in 5 Americans believe overall health care costs will decrease as a result of more data exchange, despite the claim from many industry stakeholders that costs reduction will occur.
The Bottom Line
Former Yahoo CEO Marissa Mayer famously said that “with data collection, ‘the sooner the better’ is always the best answer.” While there is considerable opportunity to improve the health care system through increased exchange of PHI and other personal health data, it will be imperative for health care stakeholders to know and understand patient sentiment. That sentiment will not only drive policy and regulatory activity, but will underpin the reputational risk that health sector companies face as they explore data partnerships and commercialization.
About the Survey
Public Opinion Strategies conducted a national survey of 1,010 adults, August 5–7, 2019. Results from the survey have a confidence interval of plus or minus 3.52 percentage points. The topline document can be found here and an accompanying PowerPoint can be found here.
About the Authors
Nathan Bays is an experienced health care executive with extensive experience in law, health policy, investment banking, and venture capital, as well as advising Leading Health Systems, early stage companies, and financial sponsors on health policy, strategy, and M&A. In addition to his advisory work, he is a Venture Partner at LifeForce Capital, a health care investment firm. Nathan previously served as a Managing Director at Cain Brothers, and General Counsel and Executive Director at The Health Management Academy. He is a frequent author and speaker on industry trends, strategy, the M&A landscape, and federal health policy. Nathan received his juris doctor from Wake Forest University School of Law.
Jarrett Lewis is a Partner at Public Opinion Strategies, a national political, public affairs, and corporate research firm. He has extensive experience conducting survey research for Leading Health Systems and health care companies. He previously was Executive Director of Health Policy at The Health Management Academy, serving as an advisor to C-Suite hospital system executives on federal policy initiatives and strategy. Prior to that he served as a strategist and pollster to the Romney for President Campaign. Jarrett is a regular speaker on federal health policy and public opinion and consumerism in health care. He has an MBA from the Fuqua School of Business at Duke University and a BA in Political Science from Clemson University.
