A recent paper caught my attention because of what it says about the anticipated increased involvement of patients in their own care. The study, released in March and conducted for NEJM Catalyst, is titled, "Care Redesign: What Data Can Really Do for Health Care," The study looked at the attitudes of healthcare executives, clinical leaders and clinicians about what data is most important now in healthcare and how they anticipate that will change in the future.
In the NEJM survey, respondents were asked to identify what they believed to be the most useful sources of data today and then what those would be in 5 years. Today, clinical data rated highest by far at 92% while at number two and number three were cost data (56%) and claims data (45%). However, when asked about what they believed would be the most valuable data sources in 5 years, claims data is anticipated to drop off significantly in value (scoring only 32%), and clinical and cost data will be joined at the top by patient-generated data and genomic data (both scoring 40%).
Participants in this study were also asked to select what they believed to be the biggest opportunities for use of data in healthcare, and 81% of them put care coordination at the top of the list, followed closely by improved decision support (79%).
In short, the surveyed leaders point to the rapidly growing importance of patient-reported outcomes, measures of care coordination, and improved decision support. These areas need to be prioritized if we are to truly navigate to value in healthcare. These data are patient-centric, and patient-reported, and they form the foundation for greater collaboration between patients and providers as well as greater coordination between teams of providers. Let me provide an example.
Turning the Data into Opportunities
Many studies have shown a big difference between what healthcare providers consider to be medically indicated and what patients prefer when they are fully informed of their conditions and options. Therefore, we need to improve how we inform patients of their options and collaborate with them to arrive at the best decision.
In my book, Navigating to Value in Healthcare, I write about the 3-talk model of shared decision-making; Team Talk, Option Talk and Decision Talk. It's too involved to detail in a blog article but basically the 3-talk model consists of inviting the patient and initiating deliberate collaboration with him or her; followed by an option talk to describe the options, benefits and risks while supporting the patient as he or she moves from initial to informed preferences about the available options; and then a discussion about the decision when the patient is ready. In the decision talk, you make sure the patient’s preferences are informed and then confirm your understanding of them.
In the book I also detail two patient-reported measures for assessing the shared decision making and improving the patient experience called CollaboRATE and IntegRATE. CollaboRATE helps us understand how well we are doing as we seek to understand what matters most to patients and work to ensure that knowledge underpins the care plan. IntegRATE helps us to assess, from the patient’s perspective, how well our care teams are working together. Both measures are used to evaluate and continuously improve. These data can then be combined with other patient-reported outcomes to document changes in health status. Cost allocation methods are also used to monitor the costs to your organization for the goods and services associated with the changes in health status. That is the definition of calculating value.
Dealing with a Data Disconnect
Just as there can be huge differences between what well-informed patients want and what healthcare providers think they want, it appears there is a similar contrast between what healthcare leaders see as important and the overhyped dreams of big data vendors.
Leaders in healthcare are dealing with greater chaos and uncertainty today. When it comes to the information they need to assess where they are and where they are going, they are often flying blind. Essential data on the value of the services is lacking or missing. What they need most consist of outcomes that matter to patients and the costs associated with achieving those outcomes. Yet, few organizations have started to develop the capacity to measure patient-reported outcomes, to understand the costs of producing the care they deliver, and to govern change.
Navigating from volume to value will be more difficult and take longer than we’ve been promised because the system we have now is profitable for many of us, but it is not financially sustainable in the long run, not for patients, communities, nor the healthcare system as a whole.
For the necessary changes to happen we need to create systems and processes that reliably produce high-quality outcomes, keep their costs under control, accurately identify patient preferences, and coordinate care to meet patients’ needs. In my experience, the resistance to those changes can be overcome when we measure what matters to patients and create an environment that emphasizes learning from those measurements.
One last point. The NEJM study found that leaders believe the lack of interoperability is the biggest barrier to functionality in healthcare information systems, most notably in EHRs. I believe the interoperability challenge is overblown. It has, in fact, been solved in other industries. It is no longer a matter of not knowing how to achieve interoperability, it is a matter of getting it done.