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As we wait for final rules that will enable consumers to freely access their health data, electronic health record (EHR) giant Epic is saying breaking down the silos where this information lives will create a privacy hazard for patients.

While privacy concerns over health data sharing are always legitimate, they can’t stem the tide of the inevitable: Patients and consumers are demanding access to their data, and new proposed government rules supporting a consumer-directed, seamless flow of medical information will likely go into effect as soon as this month.

When they do, it will accelerate the race among technology companies to offer consumers the end-to-end healthcare experience and outcomes we’ve all been missing. At the same time, they will force the government to move quickly to establish a new privacy framework that will replace HIPAA’s limited reach and work to benefit all stakeholders.

Case Study

Across-the-Board Impact of an OB-GYN Hospitalist Program

A Denver facility saw across-the-board improvements in patient satisfaction, maternal quality metrics, decreased subsidy and increased service volume, thanks to the rollout of the first OB-GYN hospitalist program in the state.

See how

We could be in for a wild ride. But when the dust settles, we will have what we should have had all along: a healthcare system where consumers sit at the center and are empowered by ownership of their own health data.

A snapshot of health IT’s bumpy history

In 2004, the Office of the National Coordinator for Health IT released a framework for strategic action, the decade of health information technology: delivering consumer-centric and information-rich care (PDF).

I worked for David Brailer at the time, who was appointed by President George W. Bush to be the country’s first information “czar” for healthcare. Dr. Brailer is still an advocate for information-sharing, recently calling on healthcare CEOs to lean into, not away from, the opportunity to engage the patient in a more meaningful way. If healthcare CEOs fall short, tech companies will fill the void (more on that later). 

We envisioned a system where important health data would follow the individual by building interoperability into EHRs from the start—a vision that tragically has yet to be realized. 

ELATED: Epic’s Judy Faulkner: ONC data blocking rule undermines privacy, intellectual property protections

We imagined health data would function as a powerful currency for consumers, but to date, this valuable asset has stayed in the hands of EHR companies who keep it under lock and key. 

Consumers will soon hold this currency in their hands for the first time. If they seek to understand and apply their health data like they have with their genetic information—consider the explosion of tech companies like 23andMe and others—we’ll see dramatic shifts in the health tech landscape.

Consumers are most likely to share their health information with companies that have proven they can offer a powerful, secure and user-friendly experience: companies like Amazon, Apple, Google and a host of established and emerging technology players.

We must now endeavor to build the necessary security and privacy frameworks that ensure the consumer will always be protected and in control of their personal health information.

Where to go from here

We’re entering a new era, one where healthcare providers, payers, solutions providers and technology companies will create a superior healthcare experience and deliver improved patient outcomes.

The days of medical information being walled off and guarded by EHR vendors are coming to an end.

We can expect three things to occur once the rules are finalized:

  •  EHR companies will see their business models disrupted: As consumers control their health data, the silos created by EHR companies will gradually erode. This will change these companies’ business models permanently. No longer the central gatekeepers of the country’s medical information, EHR companies will scramble to build new capabilities and services in a bid to remain important players in healthcare.
  • Technology companies that build trust will earn their moment in the sun: Consumers have shown a willingness to share sensitive information with technology companies in exchange for insights about their health. With new rules in place that turn loose volumes of health data, incumbent tech giants and newcomers will compete to create compelling new healthcare experiences and superior outcomes. Consumers will decide the winners by preferentially sharing their data with companies whose products and services are both transparent and secure.
  • New privacy laws must take shape: As tech companies compete to win the trust of consumers, the government will develop updated rules of the road for our new, consumer-centric health system. This effort is already underway thanks to multi-stakeholder groups like the CARIN Alliance and the work that the Robert Wood Johnson Foundation is doing with Manatt. We can expect these efforts to ramp up quickly.

HIPAA doesn’t cover many of the new digital products and services that can benefit consumers, but that doesn’t mean consumers and technology companies cannot hold this data. It means we need to modernize HIPAA.

When these trends come to pass, it will be the consumer—newly empowered with their health data—who will drive our country toward value-based care. Top-down decisions by healthcare providers, insurers and government agencies haven’t accomplished this vision—consumers can and will.

As a consumer, a health tech entrepreneur, a mother and a former federal and state official, I am eager to bear witness as consumers take the driver’s seat, which was the intention all along.

Lori Evans Bernstein is a co-founder and the president and chief operating officer of HealthReveal. She was a senior advisor to the first National Coordinator for Health IT in the U.S. Department of Health and Human Services and served as deputy commissioner of the New York State Department of Health’s Office of Health IT Transformation. 

Executives are bullish on the potential of artificial intelligence to improve healthcare. But they say adoption is not happening quickly enough due to a lack of workforce training, high costs, and privacy risks, according to a survey by audit, tax, and advisory services firm KPMG.

KPMG’s survey of healthcare leaders was part of a larger study of how executives across five industries view the future of AI in their sectors, and the steps they are taking to maximize its benefits and mitigate its challenges.

“The pace with which hospital systems have adopted AI and automation programs has dramatically increased since 2017. Virtually all major healthcare providers are moving ahead with pilots or programs in these areas. The medical literature is showing support of AI’s power as a tool to help clinicians,” Melissa Edwards, managing director, digital enablement, KPMG, said in the report.

Case Study

Across-the-Board Impact of an OB-GYN Hospitalist Program

A Denver facility saw across-the-board improvements in patient satisfaction, maternal quality metrics, decreased subsidy and increased service volume, thanks to the rollout of the first OB-GYN hospitalist program in the state.

See how

An overwhelming majority of healthcare respondents (89%) think AI is already creating efficiencies in their systems, and 91% believe it is increasing patient access to care.

Many of the AI-related services and solutions being advanced in healthcare today are largely in the clinical, patient-facing space.

“Basic forms of automation are proving to be the ‘gateway drug’ to advanced forms of AI—such as scanning documents to determine the urgency of a referral. Applying AI to make earlier diagnoses of critical illnesses is a key area,” Edwards said.

  • Nine out of 10 healthcare executives are confident that AI will improve the patient experience with the greatest impacts being found on diagnostics, electronic records management and incorporating robotics into tasks.
     
  • More than two-thirds of healthcare stakeholders (68%) are confident AI will eventually be effective in diagnosing patient illnesses and conditions, and close to half (47%) believe that diagnostics will have a significant impact soon—within the next two years.
     
  • Healthcare executives also anticipate gains in process automation, with 40% seeing X-rays and CT scans being handled robotically.

Recent findings indicate that function may be close to reality. Google Health reported that an AI model developed and deployed by its DeepMind subsidiary was more effective in screening patients for breast cancer than human doctors using recent X-rays only, despite having access to patients’ previous records.

But the pace of progress is too slow, according to one-third of executives, citing barriers such as a lack of workforce talent and the high cost of implementing AI tools.

To date, only 44% of healthcare insiders say their employees are prepared for AI adoption, which is substantially lower than some of the other industries surveyed. Less than half of healthcare organizations (47%) offer AI training courses to employees.

Just 67% of healthcare insiders say their employees support AI adoption, the lowest ranking of any industry, according to KPMG.

Many healthcare institutions lack a breadth of individuals who “speak” the language of AI, Edwards said.

“Comprehending the full range of AI technology, and how best to apply it in a healthcare setting, is a learned skill that grows out of pilots and tests. Building an AI-ready workforce requires a wholesale change in the approach to training and how to acquire talent. Having people who understand how AI can solve big, complex problems is critical,” she said.

Health systems have already made significant capital investments to meet electronic health records (EHR) requirements. To get AI off the ground requires even more of an investment, and, as a result, some health systems are slower to allocate full funding for AI.

More than half of executives (54%) believe that AI to date has actually increased rather than decreased the overall cost of healthcare. Decision-makers are struggling to determine where to place their AI best bets.

“The question is, ‘Where do I put my AI efforts to get the greatest gain for the business?’ Trying to assess what ROI will look like is a very relevant point as they embark on their AI journey,” Edwards said.

Healthcare executives also are concerned that AI could threaten the security and privacy of patient data. Relatedly, 86% say their organizations are taking care to protect patient privacy as it implements AI.

As the industry waits for a landmark rule aimed at opening up access to patient data, Donald Rucker, M.D. said Wednesday that regulators are challenged with balancing data privacy and transparency.

The proposed interoperability rule will be coming out “relatively soon,” Rucker, who is head of the Office of the National Coordinator for Health IT (ONC), said during a Health IT Advisory Committee meeting Wednesday.

Many have speculated that the rule will be released during the Healthcare Information and Management Systems Society conference in March.

Case Study

Across-the-Board Impact of an OB-GYN Hospitalist Program

A Denver facility saw across-the-board improvements in patient satisfaction, maternal quality metrics, decreased subsidy and increased service volume, thanks to the rollout of the first OB-GYN hospitalist program in the state.

See how

A year ago, ONC, which is part of the Department of Health and Human Services (HHS), proposed an interoperability and information-blocking rule that defines the demands on healthcare providers and electronic health record (EHR) vendors for data sharing. The rule also outlines exceptions to the prohibition against information blocking and provides standardized criteria for application programming interface (API) development. 

HHS officials say the rule, which promotes the use of application programming interfaces (APIs), will help bring healthcare into the modern app economy.

The proposed rule has created an industry rift—EHR vendor Epic, many health systems, and some privacy groups have voiced strong opposition to the rule. About 60 health systems signed an opposition letter circulated by Epic CEO Judy Faulkner that was sent to Azar. The letter cited risks to patient privacy and intellectual property if the rules are finalized now.

Meanwhile, newer technology entrants to healthcare such as Apple and Microsoft, some EHR companies like Cerner and consumer advocates are backing the rule. Google Health’s David Feinberg, M.D. has met with HHS officials about the rule, Politico reported.

Rucker was asked by members of the Health IT Advisory Committee about the status of the rule.

“There are complicated issues balancing the various interests of the American public to get a good deal in healthcare, to have transparency, to do this in a way that doesn’t prevent innovation and allows vendors to be able to build products in a practical way and draws the right balance on protecting privacy, yet addressing what is ultimately the biggest issue, which is simply the vast amount of healthcare costs that are out there and lack of patients having agency.”

As the lobbying battle over the rule goes on, Politico reported Tuesday that ONC’s rules gained a rare endorsement from a hospital system: the University of California, San Francisco. The “nation needs ONC’s proposed regulations,” the leaders of UCSF and its health system wrote to HHS Secretary Alex Azar, according to Politico.

All the lobbying efforts and public debates could have some positive results, Rucker said.

“Maybe it’s had the unintended benefit of getting people to focus on how this all will play out and part of a broader dialogue about what we want to do with technology in our lives,” he said.