From electronic health records to wearable technologies, researchers are increasingly looking at patient data to understand and improve population health outcomes. While the proliferation of data—and the tools to analyze it—offers tremendous potential, patient privacy and security concerns are widespread.
“The growing collection of digital health information and blurred lines between health and non-health data also raise privacy and security concerns that are in tension with benefits," explain researchers in a 2023 article on consumer viewpoints regarding health data collection published in JAMA Network Open.
The potential of big data in healthcare
Advances in artificial intelligence (AI) are already altering healthcare research, delivery, and systems. The potential for even broader changes is anticipated as machine learning and other AI tools advance.
Doctors with big data samples could better identify the warning signs of an illness before it arises, explains a briefing on healthcare data from Tulane University's School of Public Health and Tropical Medicine. Meanwhile, healthcare administrators might use data to inform funding and resource allocation. Health data combined with geographic information could generate maps highlighting underserved locations, a tool that could inform tailored health interventions. On a clinical level, care teams can connect and consolidate data from multiple sources, improving communication and creating a more holistic view of a patient's health history.
Concerns about privacy when sharing health data
Even as data's potential is enthusiastically touted, questions about patient perception and willingness to share their personal health information persist.
An American Medical Association survey of 1,000 US patients found that people are “deeply concerned" over the lack of security and confidentiality of their personal health data. More than 92% of people surveyed believed that privacy is a right and that corporations shouldn't be able to purchase their health information.
The study also shed light on some important nuances, such as the role of the person or party accessing the data. About 75% of people are most comfortable with their physician having access to their data while about 64% feel at ease with their physician or hospital/health system having access. Unsurprisingly, survey participants reported they felt least comfortable with social media sites, employers, and big tech companies accessing their health information.
How the data is collected influences patient sentiment, too. About 70% of people surveyed hesitate at least sometimes when deciding whether to use a health-related app because of privacy concerns while 60% opted not to use the app at all for those reasons.
Health data prompts equity questions
The study also explored people's key concerns about sharing their health data. Nearly 60% of people worried their health information could be used to discriminate against them, negatively impacting their employment, insurance benefits or even housing opportunities.
The responses also underscore digital health equity concerns as these fears were not shared evenly across sampled groups. A higher percentage of Hispanic/Latinx and American Indian/Alaskan Natives reported their hesitations about data sharing stem from concerns with obtaining or keeping health insurance. Meanwhile, 66% of transgender individuals reported being “extremely concerned" that their health data could negatively impact their employment status.
People more comfortable with anonymized health data
Those concerns might explain why people tend to be more comfortable with anonymous data sharing.
According to the UK-based group Understanding Patient Data, there are fairly consistent themes when it comes to patient sentiment across surveys. People tend to feel comfortable when anonymized data is gathered from medical records and used for the public benefit, such as for research purposes.
Those findings support earlier research on patient acceptance of data sharing, including those published in The Journal of Medical Internet Research. Through interviews with dozens of patients with chronic rhematic disease, researchers documented support for anonymized electronic patient records for research purposes. Even so, people expressed a lack of transparency and awareness around data usage corresponding with public trust challenges.
How health data is gathered matters to patients
The specifics surrounding the data capture itself was explored in an article in JAMA Network Open. In that 2023-published study, researchers set out to understand what factors influenced consumers' willingness to share their digital health information. Specifically, they sought to understand what role privacy assurances, transparency, regulatory oversight, and the ability to delete data might play.
The survey, which included a nationally representative sample of 3,539 US adults, found that a combination of privacy protections, regulatory oversight, and the ability to access and delete data were all connected to an individual's higher likelihood of sharing that digital health data. Participants were more likely to share their health information as privacy protections accumulated, starting with consent, then followed by data deletion, oversight, and transparency.
Those findings suggest that adding protections around data transparency, regulatory oversight, and the ability to delete data might build consumer trust, authors wrote.
Third-party sharing of health data prompts questions
Adding to the complexity is the role of third parties in healthcare data gathering and collection. Many healthcare systems already work with third-party companies to collect and compile data for quality and system-level improvements. In a recent study published in Humanities & Social Sciences Communications, researchers examined people's comfort level with sharing health data with these companies and what factors might influence their opinions. Among their findings:
- The public is more comfortable sharing data with third-party companies for patient purposes compared to business reasons
- Higher education was associated with greater comfort with sharing health data for patient purposes as well as less comfort for business purposes
- Patients between the ages of 45-59 were less comfortable sharing their health data with third-party companies for patient purposes than people ages 18-29
- Better communication and acknowledgement of privacy concerns and the steps being taken to protect patient privacy could increase people's comfort levels
- Another way to increase comfort: Emphasizing the patient-centered benefits of data collection
Consent for health data sharing can be complicated
When it comes to consumer surveys on data sharing, the issue of consent consistently emerges as a key priority. Even though the concept may seem straightforward, there are numerous complexities associated with its application. For example, an article published in AI & Society looked at how the proliferation of “big data practices" has undermined informed consumer consent.
They offer numerous recent examples of how express consent, or “consent pertaining specifically to the activity to which the consent is given" has not always been sought by companies who are gathering—and selling—people's personal data. Plus, the widespread use of “detailed terms and conditions" that require consumers to simply tick a box raises questions as to whether someone truly understands how their data will be used.
Repurposing health data creates challenges
As AI capacities develop, an additional data challenge may arise from repurposing existing medical data sets. While this use can be beneficial, informed consent may need to be obtained again if patient information is being used in a new way. For example, someone's postal code and medical information being used to influence insurance premiums—a use the individual might not have originally approved.
But navigating the complexities of mass data gathering isn't a simple task. It may be hard to predict how data gathered now will be used in the future.
"Urgent need" to build societal trust
Consumers appear to be responding to the uncharted road ahead with hesitation. A recently-published article in Journal of Medical Ethics suggests societal trust could present a stumbling block, even when data is collected with the goal of improving patient-centered care.
Researchers combed 27 journal articles on the topic and came to this conclusion: Even though participants recognize the potential of data-driven research, they still had concerns about confidentiality and potential abuse. Those findings suggest there isn't an automatic so-called social license, or community acceptance, for data-driven health research. Rather, there's “an urgent need" to invest in societal trust in both researchers themselves and institutions, authors wrote.
Understanding how people feel about data sharing is a vital part of that process. A governance framework for data that incorporates diverse patient values, needs and interests could also strengthen public support and acceptance, the authors wrote.
Safeguarding patient privacy
Indeed, as digital health technologies proliferate, more effort needs to be taken to safeguard and protect patient's health information notes the AMA in a press release on their survey findings. That organization has created a list of patient privacy rights that include knowing exactly what individual date an entity is accessing and using and for what purpose at or before it's collected.
RTI can help with data collection complexities
At RTI, we can help you best utilize data to improve health outcomes while respecting patient sentiment and keeping health equity at the forefront. We can integrate diverse data sets and use advanced analytics and predictive modeling to inform care decisions, tailor interventions, and improve systems. Let us help you figure out the best way to leverage your data.