When it comes to their health care, many patients are becoming data scientists as they begin to gain access to data related to their health. In response to this data disruption, health plans, pharmaceutical companies, federal agencies, and nonprofits should develop tools and coaching services to help people get the most from their health data. When that happens, all health stakeholders can benefit.
We’ve already experienced disruption in a wide range of industries, from transportation, to food delivery, to entertainment. Now the one thing we hold most dear—our health—appears to be on the cusp of significant change. Most of us are ready to see the health care industry disrupted, especially if it leads to faster, better, and less expensive options. Health care providers and clinicians, for-profit and non-profit organizations, and academic researchers will likely all be impacted by data disruption.
Amazon Web Services launched a new artificial intelligence (AI) solution that has the capability to mine patient information from multiple sources, including electronic health records (EHRs) and unstructured medical text, such as hospital admission notes of patient medical histories. The software uses machine learning to extract disease conditions, medications, and treatment outcomes from patient notes, clinical trial reports, and other electronic health records.1 During an October 16 call to discuss earnings, UnitedHealth Group CEO David Wichmann said the company intends to give 50 million members access to a “fully integrated and fully portable” electronic health record (EHR). Along with medical information, members would receive the “next best action detail” for maintaining or improving their health.2
The pace of such developments is quickening. It seems that almost weekly, we hear about some new innovation that is designed to improve and reduce health costs, make information more transparent, or improve outcomes. While the pace is picking up, it’s difficult to know exactly where it is all headed.
What might a disrupted health care system look like?
I recently attended the annual Milken Institute Future of Health Summit. A panel on this topic featured government and private-sector leaders who offered their thoughts on what post-disruption scenarios might look like, and how health might be improved.
- The first scenario would create portable health information—via EHRs—so that consumers would have their health information at their fingertips. This might be similar to the way we already access our entertainment options and financial information. In health care, easy access to our health information could lead to the creation of giant data sets that could be mined by researchers to further improve health.
- The second scenario would aggregate data at the population level, which could help health departments and health systems develop tools that could help forecast population health issues, like the opioid epidemic or an emerging flu pandemic.
As these scenarios become reality, the panel suggested that we all watch and listen closely, and highlight use cases that can help educate us. The power of big data can impact the entire health care and research ecosystem—from life science companies, to health plans and government payers, to hospitals and health departments, to patients.
There are already several bright spots to watch. The People-Centered Research Foundation (PCRF), for example, houses the PCORnet sites and more than 100 million datasets. With patient centricity at their core, PCRF can provide industry and academics with new ways to develop more patient-centered findings. Models that create data to insights could lead to faster, better, and less expensive research.
Nonprofits could help build a bridge between patients and their data
Another interesting theme at the meeting was the randomness of access points for patients who want to be connected to cutting-edge research and care. This is an area that nonprofit health and research organizations (e.g., Michael J. Fox Foundation and JDRF) are working to improve. Another key player driving change is the National Institutes of Health (NIH). NIH’s Data Commons work allows researchers to share data in a cloud-based platform to increase opportunities for novel scientific research that might not happen otherwise. Stakeholders should consider working with nonprofit organizations to partner with patient communities and create new tools for patients.
Many patients want to see some disruption in this area, and want to see new ways to share data if it means improved treatments and care flow from it. Can nonprofits play a role in helping patients have control of their data? Absolutely. Nonprofits can be a vital bridge between the patient and the care and research system, and they should be nimble as new tools and data disruption is brought forward. I would encourage these nonprofits to try to identify important trends in data so that they can plan and partner with other stakeholders appropriately. Non-profits often have the trusted relationship with patients, and they generally understand the preferences and perspectives of patients.
We also need other key health care stakeholders to have better interfaces so that they can understand what each other is doing. More and more, we are seeing consortia being created to enable pre-competitive research and development. In research, we have seen platform trials offer patients and researchers alike real-time data curation opportunities (See Deloitte’s recent publication on this topic).
We should pioneer novel ways for patients to access their health data. Health care stakeholders should share use cases that demonstrate how health data can make a difference to individuals, to communities, and to the health care system—as well as our R&D system. There is a place at the table for every sector, but let’s get ahead of the curve and not play a game of catchup so that we can all reap the benefits together.
- Amazon press release, November 27 (https://press.aboutamazon.com/news-releases/news-release-details/amazon-web-services-announces-13-new-machine-learning-services)
- UnitedHealth Group October 16, 2018 third-quarter earnings call transcript (https://seekingalpha.com/article/4212003-unitedhealth-group-inc-unh-ceo-david-wichmann-q3-2018-results-earnings-call-transcript?part=single)