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Health care is entering a new era of personalization at scale. Cross-industry partnerships and advances in technology are allowing organizations to harness a wealth of data from patients and consumers—but they also must navigate the fine line between personalization versus intrusiveness.

So how do leaders advance data-powered innovation while also remaining attuned to patients’ and consumers’ evolving attitudes around data privacy? And how do organizations enfranchise patients and consumers to ensure trust, agency, and truly person-centered health care?

At Health Evolution’s 2023 Summit, health care experts and leaders came together to address these important questions in a discussion titled “The Personalization Paradox – Balancing Data-Powered Innovation with Consumer Privacy,” moderated by LaShonda Anderson-Williams, EVP & CRO, Salesforce Global Health & Life. The conversation featured perspectives from leaders Karen DeSalvo, MD, Chief Health Officer, Google, and former Assistant Secretary for Health, U.S. Department of Health and Human Services; Gianrico Farrugia, MD, President & CEO, Mayo Clinic; and David Holmberg, President & CEO, Highmark Health.

During the conversation, leaders explored how organizations can evolve to provide “best-in-class” personalized health care for the people they serve.

Personalized health is ‘hard to do in a meaningful way’

Building personalized experiences and health care for patients is no easy task. Organizations across the health care industry are trying to “personalize engagement” and get “closer to the consumer, the patient, or the member,” but “it’s very hard to do that in a meaningful way, despite the rich data that health care companies have,” Anderson-Williams explained.

Part of the reason it’s so difficult to personalize health care is that different people want different experiences. Health care companies are trying to personalize encounters across consumers in different age groups and generations with different preferences and expectations, Anderson-Williams said.

Organizations also are struggling to identify what personalization means for them and the people they serve. As a result, “best-in-class” personalization could look different across different organizations, Anderson-Williams said.

How organizations can build ‘best-in-class’ personalized health care

Despite those challenges, leaders said organizations must evolve to provide high-quality personalized health care for the people they serve.

“Best-in-class has to look different than it looks today,” Farrugia said.

“In general, nobody’s quite totally satisfied with what they have. All the issues that we talk about today—cost, accessibility, affordability, health care disparities—are topics we’re passionate about, but people were equally passionate about them 10 to 15 years ago. And that tells us there has to be a significant change,” Farrugia explained. “To be best in class, you have to be able to customize, personalize, and increase data privacy. And to do that, you have to change to a different model,” he said.

Farrugia noted that Mayo Clinic has advocated for organizations across the health care industry to work together to achieve best-in-class personalization by “moving health care as a whole from a pipeline model to a platform model.”

Specifically, leaders noted that organizations must collaborate with others across the industry and create platforms that:

  1. Build trust between industry partners and patients;
  2. Meet patients where they are;
  3. Guide patients to care that’s right for them; and
  4. Use data and insights to go upstream of patients’ immediate health needs to promote long-term health and wellness.

Building trust between industry partners and patients

Trust is the fundamental foundation needed to begin building best-in-class personalization in health care, leaders said.

Organizations have to build trust between both their internal teams and their industry partners. “You cannot deal with holistic data if you do not have a trusted relationship that is bilateral,” Farrugia said. For Mayo Clinic, “that trusted relationship has two main tenets,” he explained. “One is that we will not monetize data. And the second is that, for holistic data, you must keep the data set separate and then you federate to get the answers you want.”

Holmberg said organizations must collaborate on blending different types of data together in a way that “people can absorb and understand.” From there, organizations must work together to make decisions based on the data and adjust as opportunities to improve arise.

DeSalvo said building trust between organizations partnering together also is essential to building trust between health care organizations and the people they serve. “If you don’t have trust with the organizations that are supporting the patient—payers, the providers, and the rest of the ecosystem—then the patient’s going to get caught in the middle,” she said.

Building trust between health care organizations and the people they serve also requires differentiated approaches to data privacy, Farrugia said. “We have to make sure that we are creating flexible ways of allowing people to choose the kind of privacy they need, which will vary across their lifetime. And I strongly believe the way to do that is to make sure we’re not commingling data, but rather using data and using what we now have available to us today, with artificial intelligence and with other mechanisms, to be able to get the answers we need without putting patients’ data privacy at risk.”

DeSalvo echoed Farrugia’s call. “It’s really important to make sure that we’re being really clear with people about what we’re learning about them” and how that data is being shared.

Meeting patients where they are

Health care organizations must “figure out how to meet people where they are instead of trying to convince them that they should come to us,” Holmberg said. He added that organizations must “take the data and knowledge they have and put it in the hands of the people who have the most potential to do something with it—the consumer.”

DeSalvo said it’s important to do so in ways that “are mobile first.” She explained that “three-quarters of people go to the internet first before they seek care,” and many then decide not to seek further care. Those statistics, paired with the “big uptick in telehealth” that the industry experienced during the COVID-19 pandemic, show “how important a digital front door is for people to seek information” and care, she said.

“People are choosing mobile-first” options when they’re available, “and I think we all have to figure out how to make those options for patients who want to move in that direction,” DeSalvo said.

Guiding patients to care that’s right for them

But Holmberg noted that what happens after a patient starts their care journey online “depends on health care organizations’ ability to engage” people.

Organizations need to change their interfaces for patients and members “so that it’s easy for them to seek the right care and do it in advance of some sort of episode, so that we can get ahead of the game,” Holmberg said. “And the only way that’s going to work is if we give people the information in the right way and the right moment—that’s the real challenge,” he noted.

To do so, Holmberg said organizations must “really understand not only the journey once somebody has a disease, but also what their socioeconomic issues are and what’s driving behavior.” He continued, “Organizations can take all that information and turn it into a superpower by putting it back in patients’ hands in simple formats that they can understand and use to take action.”

One way to do that is by using platforms that “harmonize standards, application programming interfaces (APIs), and data” in ways that can help facilitate patients’ movement through their care journey, DeSalvo said. For example, she noted that patients often use the internet to search for providers near them who accept their insurance, and they want to be able to schedule appointments with those providers online. According to DeSalvo, Google has partnered with organizations that have made their APIs available to enable those functions and allow patients to schedule directly with those providers through Google’s search platform. “So it’s easier for people to navigate to care, and then it’s easier for providers to be able to reach the people they want to reach,” she said.

DeSalvo also acknowledged the role organizations’ platforms and data can play in helping to guide patients to the care that’s best for them. “Data can do a much better job for patients, with their consent, of anticipating what’s the right chemo regimen, what’s the right care plan for their diabetes,” etc., she said.

Farrugia added that it’s important to keep in mind that “no one model will work for everybody, and neither will one model work for the same person over the course of their lifetime.” As a result, “there is a place for bots, there is a place for self-learning, there is a place for apps, there is a place for integrated care,” he said, “and tech will enable organizations to actually make it easier for patients and providers to not have to do a lot of the gathering of information themselves, but rather have that information brought to them.”

Using data and insights to go upstream of patients’ immediate needs and promote health

Most health care organizations are “data rich and insight poor,” and “most of what happens in health care is reactive, not proactive” Holmberg said. “We need to change that paradigm,” he noted, adding, “If we can get the right information in people’s hands at the right moment, all of a sudden that changes the whole dynamic about being proactive.”

DeSalvo raised the importance of bringing together data that looks at people “holistically” and makes “health a part of people’s life flow so it’s more natural, more upstream, and when they really need help.”

“We need to think about how to make patients’ experience not just personalized, but anticipatory,” DeSalvo said.

To do that, health care entities across the industry must work together. It takes having providers, payers, life sciences companies, and others at the table to help craft a holistic approach and weigh in on areas where the industry can create partnerships and move forward together, leaders said. That collaboration can “totally change how we think and give us a different perspective on the choices that we’re making,” Holmberg noted.

Organizations also must come together to harmonize standards and data in ways that enable the creation of platforms that are easy for all stakeholders to use. “We have to make the system more interoperable, and I don’t just mean between electronic health record systems. It’s about how we think about data flow between health care systems, but also with consumers and the rest of the ecosystem, so it gets easier for people to navigate,” DeSalvo said.

Farrugia agreed. “More and more, most of our relevant health data lives outside of the medical record,” so organizations need to also incorporate data from across the health ecosystem to “get a much fuller view of what patients need to do to keep well, and if they’re sick, to get better,” he added.

However, Farrugia noted that although “data standards for health care exist and are getting quite good, it is unrealistic to expect that all data are going to be in the same format that can be used to create one holistic picture of somebody’s current and future health.” Therefore, organizations “need to create something, like a set of tools that can take disparate data sets in health-related areas and make them such that they can then be used by others to validate and then discover new insights,” he said.

“If you bring all those things together—maintain trust, be able to incorporate disparate data sets, and, importantly, then extract the maximum out of them—we’ll be well on our way to creating a much better experience and better outcomes for our patients,” Farrugia said.

Ashley Antonelli

Senior Manager, Executive Communications