Protecting patient data sharing & ownership with ethical data use

April 01, 2024 - In pursuit of consumer-centered healthcare, the medical industry has seen the growing prominence of patient data sharing.

As consumerism has gripped the healthcare industry, health systems across the country are working to crack the code of how to adapt to a whole new model of care. Gone are the days of a provider-directed healthcare experience and paternalistic patient-provider relationships.

Patients are now in the driver’s seat of their healthcare journeys, and it’s up to health systems to deliver on patients’ preferences.

From crafting personalized medicine approaches to simply getting to know a patient population on a deeper level, the road to consumer-obsessed healthcare is paved with data, according to Arielle Trzcinski, a principal analyst at Forrester who recently co-authored a report about the key shifts health systems can expect in the near future.

“When I think about just consumer control of their data, it's in part because it will help you create that more robust understanding of your consumer,” Trzcinski said in the first part of this two-part interview series.

“We have so much data within healthcare, but we struggle so much to be able to analyze it and turn it into something that is usable and that we can turn into insight or turn into a training data set. We have to solve that problem to really think about how do we truly create valuable trustworthy experiences in the future and be able to tap into some of these technologies in a more scalable way.”

Patient-generated health data can move beyond just offering consumer insights, too. Data like digital biomarkers can be helpful in assessing patient risk and determining more personalized care plans.

But digital biomarkers have seen little uptake in part due to reimbursement issues and also due to limitations in how we collect this information from patients.

In short, healthcare has a patient data problem. Despite the untapped potential that lies in the troves of data healthcare consumers organically generate in their day-to-day and during their healthcare experiences, Trzcinski indicated that health systems generally don’t have access to this information.

Right now, trust is a big issue for patients. While reports show patients are open to the idea of sharing their health information with certain healthcare entities, they want transparency and informed consent. Trzcinski added that informed consent needs to be complemented with the ability to revoke access.

“It's not just who can they share it with, but do they also have the ability to revoke access?” she pointed out. “It's the ability to say, ‘you know what? I don't think you need it anymore. Or I'm changing doctors and because I've moved and I no longer want you to have access to my health records and be able to then use it in that way for training an algorithm, for instance, or for gen AI.’ Having that choice to be able to revoke access, that capability, is not widespread.”

But even with those functions, getting the depth and breadth of patient-contributed data is going to require a patient education campaign that can cultivate trust. Indeed, it’ll go a long way to make sure consumers know they can revoke their data access, but that capability will mean nothing if they don’t know it about—or any other safeguards that are in place to protect patient privacy.

“We have an opportunity to look at how can we learn from some of that so that we can empower consumers to have more of that sense of, ‘I have ownership over my data, but I also have a responsibility to protect and safeguard that data and determine where and how it is used to some extent that can,’” Trzcinski stated.

Some healthcare stakeholders are working to introduce some more friction for consumers looking to share their data.

Most people who’ve used at least one type of digital technology are familiar with the data use disclaimers that come with using a new application. But these disclaimers are rife with legalese that doesn’t make sense to laypeople, and the consent button at the bottom of the disclaimer is all too easy to click without reviewing the content.

The “friction” Trzcinski referred to would make it harder to just click on that consent button. For example, some legal disclaimers now require the user to scroll to the bottom of the disclaimer before they’re able to hit “agree.”

But it’s a tough line to toe when health systems also prioritize a simple and easy care access process.

“In the instance of registering for an appointment and getting the same data over and over again, no, we don't want people to do that. That's frustrating. It leads to a poor experience for everyone,” Trzcinski explained.

“But when it comes to the data then being shared elsewhere, can you create more frictions or steps or screens? Not so that it's overwhelming, but to make people stop and think and understand exactly how their data is going to be used.”

It would also be helpful to periodically remind patients that their data is out there and ask them if they’d like to continue sharing or revoke access. This could help individuals who might forget they’ve contributed their data to a research study their health system is running or to train a new algorithm that’s since been completed.

“Pushing that to consumers, whether that's reminders or it is an expiration date on that access and on that, and then just asking them again to refresh and review and say, ‘yes, I still want you to have access,’” Trzcinski advised. “Those are some ways that we've seen folks navigate some of that just to create more awareness or that ethical use of data.”

Of course, health systems and leaders in the digital health space will want to avoid creating too much friction so as to avoid discouraging use.

Understanding the ethical use of patient data is a burgeoning field as stakeholders begin to simply appreciate the potential of leveraging patient data for research and technology development. As the need for more patient data sharing becomes more pronounced, it will be incumbent upon industry leaders to assess the best consumer education strategies to protect patient privacy and data ownership.