I have been talking to a young company called Unity Health Score with big plans for improving the collection and sharing of data on patients. Their 55-page business plans covers the recruitment of individuals to share health data, the storage of that data, and services to researchers, clinicians, and insurers. Along the way, Unity Health Score tussles with many problems presented by patient data.
The goals articulated for this company by founder Austin Jones include getting better data to researchers and insurers so they can reduce costs and find cures, improving communications and thus care coordination among clinicians and patients, and putting patients in control of their health data so they can decide where it goes. The multi-faceted business plan covers:
- Getting permission from patients to store data in a cloud service maintained by Unity Health Score
- Running data by the patients’ doctors to ensure accuracy
- Giving patients control over what researchers or other data users receive their data, in exchange for monetary rewards
- Earning revenue for the company and the patients by selling data to researchers and insurers
- Helping insurers adjust their plans based on analysis of incoming data
The data collected is not limited to payment data or even clinical data, but could include a grab-bag of personal data, such financial and lifestyle information. All this might yield health benefits to analytics–after all, the strategy of using powerful modern deep learning is being pursued by many other health care entities. At the same time, Jones plans to ensure might higher quality data than traditional data brokers such as Acxiom.
Now let’s see what Unity Health Score has to overcome to meet its goals. These challenges are by no means unique to these energetic entrepreneurs–they define the barriers faced by institutions throughout health care, from the smallest start-up to the Centers for Medicare & Medicaid Services.
Outreach to achieve a critical mass of patients
We can talk for weeks about quality of care and modernizing cures, but everybody who works in medicine agrees that the key problem we face is indifference. Most people don’t want to think too much about their health, are apathetic when presented with options, and stubbornly resist the simplist interventions–even taking their prescribed medication. So explaining the long-term benefits of uploading data and approving its use will be an uphill journey.
Many app developers seek adoption by major institutions, such as large insurers, hospital conglomerates, and HMOs like Kaiser. This is the smoothest path toward adoption by large numbers of consumers, and Unity Health Score includes a similar plan in its business model, According to Jones, they will require the insurance company to reduce premiums based on each patient’s health score. In return, they should be able to use the data collected to save money.
Protecting patient data
Health data is probably the most sensitive information most of us produce over our lifetimes. Financial information is important to keep safe, but you can change your bank account or credit card if your financial information is leaked–you can’t change your medical history. Security and privacy guarantees are therefore crucial for patient records. Indeed, the Unity Health Score business plan cites fears of privacy as a key risk.
Although some researchers have tried distributed patient records, stored in some repository chosen by each individual, Unith Health Score opts for central storage, like most current personal health records. This not only requires great care to secure, but places on them the burden of persuading patients that the data really will be used only for purposes chosen by the patients. Too many apps and institutions play three-card Monte with privacy policies, slipping in unauthorized uses (just think back to the recent Facebook/Cambridge Analytica scandal), so Internet users have become hypervigilant.
Unity Health Score also has to sign up physicians to check data for accuracy. This, of course, should be the priority for any data entered into any medical record. Because doctors’ time is going more and more toward the frustrating task of data entry, the company offers an enticing trade-off: the patients takes the time to enter their data, and the doctor merely verifies its accuracy. Furthermore, a consolidated medical record online can be used to speed check-in times on visits and to make data sharing on mobile devices easier.
Making the data useful
Once the patients and clinicians join Unity Health Score, the company has to follow through on its promise. This is a challenge with multiple stages.
First, much of the data will be in unstructured doctors’ notes. Jones plans to use OCR, like many other health data aggregators, to extract useful information from the notes. OCR and natural language processing may indeed be more accurate than relying on doctors to meticulously fill out dozens of structured fields in a database. But there is always room for missed diagnoses or allergies, and even for misinterpretations.
Next, data sources must be harmonized. They are likely to use different units and different lexicons. Although many parts of the medical industry are trying to standardize their codings, progress is incomplete.
The notion of a single number defining one’s health is appealing, but it might be too crude for many uses. Whether you’re making actuarial predictions (when will the individual die, or have to stop working?), estimating future health care costs, or guessing where to allocate public health resources, details about conditions may be more important than an all-encompassing number. However, many purchasers of the Unity Health Score information may still find the simplicity of a single integer useful.
Making the service attractive to data purchasers
The business plan points out that most rsearch depends on large data sets. During the company’s ramp-up phase–which could take years–they just won’t have enough patients suffering from a particular condition to interest many researchers, such as pharma companies looking for subjects. However, the company can start by selling data to academic researchers, who often can accomplish a lot with a relatively small sample. Biotech, pharma, and agencies can sign up later.
Clinicians may warm to the service much more quickly. They will appreciate having easy access to patient data for emergency room visits and care coordination in general. However, this is a very common use case for patient data, and one where many competing services are vying for a business niche.
Aligning goals of stakeholders
In some ways I have saved the hardest dilemma for last. Unity Health Care is trying to tie together many sets of stakeholders–patients, doctors, marketers, researchers, insurers–and between many of these stakeholders there are irreconcilable conflicts.
For instance, insurers will want the health score to adjust their clients’ payments, charging more for sick people. This will be feared and resented by people with pre-existing conditions, who will therefore withhold their information. In some cases, such insurer practices will worsen existing disparities for the poor and underpriviledged. The Unity Health Score business plan rejects redlining, but there may be subtler practices that many observers would consider unethical. Sometimes, incentives can also be counterproductive.
Also, as the business plan points out, many companies that currently purchase health data have goals that run counter to good health: they want to sell doctors or patients products that don’t actually help, and that run up health care costs. Some purchasers are even data thieves. Unity Health Score has a superior business model here to other data brokers, because it lets the patients approve each distribution of their data. But doing so greatly narrows the range of purchasers. Hopefully, there will be enough ethical health data users to support Unity Health Score!
This is an intriguing company with a sophisticated strategy–but one with obstacles to overcome. We can all learn from the challenges they face, because many others who want to succeed in the field of health care reform will come up against those challenges.