How can healthcare data liberate patients? Only if they know what they’re looking at

My mom trusts her doctors. My dad, an internist, has recommended most of them, and when he selected an orthopedic surgeon for her knee replacement, I called and asked a ton of questions before giving my sign-off, too. She’s been fortunate not having to research provider data because she’s had us doing that upfront translation of data into trust.

Information will set you free. That’s been the mantra in the national movement for transparency in healthcare, giving people the data to make informed choices about the quality and cost of care. The intention is right — access to information is the essential first step towards empowering consumers to control their healthcare journey. However, there’s a second step — comprehension — that is vital to enabling them to have the judgment to choose appropriate care. Data access is great, but if a patient doesn’t know what the information means, it has no value. Every patient, when presented with data, will likely be triggered to respond: “I don’t understand.” Who could blame them?

The challenge of healthcare in the U.S. isn’t clinical, it’s structural. The appropriate solutions to people’s healthcare needs exist — somewhere. But while we’ve succeeded at developing sophisticated medical interventions (advanced surgeries, diagnostics and equipment, life-saving drugs), we’ve failed at the basics: integrating patients, providers, employers and other payers, who are often isolated in information silos, so that they can work together. When a patient is confronted with who to trust to perform shoulder surgery, or if that condition would be better treated with physical therapy, they need the resources for informed shopping and analysis. Creating connectivity is the key to fixing the healthcare model, putting the patient at the center of the decision-making process by changing it from word-of-mouth to guided information.

The recent efforts at correcting the model — from commercial navigation platforms and public entities like CMS — have begun to rattle the silos and make quality and cost data available. The assumption has been that if you put healthcare data in front of an individual, they’ll know what to do with it. But, so far, those measures have failed to have the desired impact of changing behavior. The challenge is the data itself — it can be so dense as to become impenetrable, and its objectivity can be questionable. Cost breakdowns are difficult to understand because they’re often presented as abstractions that have little relationship to the patient experience. Provider quality is equally problematic to interpret. While many metrics have been introduced (that’s why STAR ratings exist, and many vendors have jumped in, trying to quantify what quality means), the self-interest of the source can cloud its value. For instance, healthcare plans that offer provider-network services operate from the premise that everyone in the network is a viable option, that all providers are equal. Patients know that isn’t the case, but even equipped with information, consumers are still lost in a healthcare desert, no more able to direct themselves to better choices than before. What else can be done to bring data to patients in a way that helps set them on the right course?

We know what the problem is. The solution is a human one. Navigation providers have mostly skimmed the surface — helping patients settle a claim or make a doctor’s appointment — when the solutions for choosing appropriate care in a complicated system are buried much deeper. Tactical help is welcome, but a more transformative approach is imperative. Third-party platforms can — and will have to — make the pivotal difference by providing patients with a hybrid approach of software, data science, and human healthcare guides. The behind-the-scenes solution requires trained professionals who have the clinical knowledge and analytical expertise to interpret data and deliver information that helps the member forge their path out of the desert — to provide the kind of informed guidance my mom has received, scaled nationally. Analyzing provider quality and cost is important, but it’s also about supporting discussions for different treatment options and making sure patients feel seen and heard by their clinical team.

It’s a heavy lift.

Currently, despite the proliferation of technology companies that have entered healthcare, no one has been able to deliver the necessary combination of information and interpretation, of learning and guidance. Earlier in my career, I led focus groups with a Fortune 50 Silicon Valley company, talking to employees who had been through cancer treatment or cared for someone who had. These were extremely bright and data-savvy individuals who had managed to pull together all kinds of information, from survival curves and clinical trials research to medical records, physicians’ notes and insurance policies. And with all that data, the biggest takeaway was that they were more confused and unsure how to interpret it to make a decision. What they wanted was someone to help them find the signal within the noise and to hold their hand while they did it.

Historically, healthcare data and analysis has been controlled to create a seller’s market (providers, hospitals, pharmacies, payers) rather than a buyer’s (employers, members).  We can create a new model where the buyers are empowered with information and a reliable, safe space to ask questions and set goals. Data can liberate patients, but as a healthcare system we need to recognize the additional steps necessary in order to make them trust its value. That can only happen when the patient is able to say, “I understand.”

Photo: LumineImages, Getty Images