Right now, patients don’t know their own strength. But as they wake up to their emerging role as keepers of their own healthcare data, the economic clout that comes with ownership will hand them a controlling stake in the new business models that are set to disrupt traditional financing across the sector.

Forecasts give a strong indication of the potential scale of that role – and the reasons why technology startups, insurers, providers and researchers are gearing up for the age of value-based health, in which patients will trade their data as currency, investing in their own care outcomes and the tools that will help to identify and realise them. 

An IDC/Seagate whitepaper, The Digitisation of the World, for example, estimates a CAGR of 36% for healthcare data by 2025, making it the fastest growing sector by some distance. Put this in the context of a global data monetisation market worth almost $708bn by the same year, and the economic impact of patient data ownership becomes clear.

According to Tata Consultancy Services, increased data sharing between healthcare organisations is set to drive innovation on three fronts: the use of analytics to gain insights that will help businesses – insurers and payers – understand customer preferences, stratify population risk and predict ‘undesirable’ events; the rise of data-oriented, personalised products that will enable patients to participate in their wellness through the value of their own data – traded, for example, in a blockchain-based data market place – and with a more accurate picture of their own health than anything afforded by a basic EHR; and the sharing of data assets created by these models.

Sophisticated models

In a sophisticated and multi-tiered data marketplace of the not-so-distant future, insurers might offer predictive analytical models for specific chronic conditions, a generation of new services will emerge and APIs will be developed for smaller insurance companies. They will be able to provide healthcare providers with analytical tools that use de-identified data to predict hospital admissions for specific populations such as diabetes patients, and pharmaceuticals with drug adherence data. Elderly healthcare providers will be able to build extended independent care models that can provide valuable data for Internet of Medical Things (IoMT) manufacturers.

The speed with which these business models will evolve depends on how quickly the healthcare sector overcomes the perennial challenge of interoperability, and patients come to terms with the value of data ownership. But as they emerge, they will have the potential to sweep away traditional institutional models, says Dr Rob Lieberthal, Principal health economics at MITRE.

Dr Lieberthal says there will be three significant drivers of health data monetisation in the next three years: patients’ need to understand their out-of-pocket costs under high-deductible health plans, along with increased price transparency; the continuing evolution and advancement of AI and machine learning, which will lead to new use cases for health data; and pushback from key stakeholders, especially patients and providers, leading to behind-the-scenes sharing of data – especially with companies that are not traditional healthcare providers or payers.

“Certain groups of patients will become savvy about their data and use it as ‘bargaining chips’ to gain access to new therapies, large reductions in cost, and better outcomes,” he says. “This could substantially increase inequality without additional regulation and careful design of algorithms and online systems.”

He also anticipates the rise of ‘data benefits managers’ – rather like pharmaceutical benefits managers – who will broker data between patients and healthcare suppliers.

Orlando Agrippa, CEO and founder of healthcare analytics company Draper & Dash, says that for new business models to emerge, it is imperative that patients come to a better understanding of what their healthcare means to them personally – and commercially.

“At the moment, my GP hands me an enormous print-out to give to my insurer,” he says. “Its value to that insurer is enormous. I’ve been researching my ancestry. The value of my DNA data to a pharma is enormous. But we need to get all of that data into a structure that offers a lot more control of its value. For example, if I need a hip replacement – for which there is record high demand on the NHS – I could go to a private provider, linked to a pharma firm, and be happy for my data to be sold for the purposes I allow. I would require a discount for the use of that data, but I would also know that I was helping other patients to reduce the cost of their care. It’s all about power and access.”

Changing the patient mindset

Agrippa says data can be the lubricant for new business models, but it will require a different patient psychology to overcome patient phobia that something bad might happen as soon as they start thinking about using their data commercially. And only then can new models start to ease global pressures – the shortage of doctors, rising populations, slow patient flow – that are compounding the challenges of 21st-century healthcare delivery.

“We can use data to drive this revolution but the question we need to answer in the near future is, how do we think about delivering care in a different way, so that data becomes the currency that helps to ease the strain on the system?” says Agrippa.

This vision informs many of the new generation of disrupters in the market such as CoverUS, an mHealth platform, which aims to close financial gaps in healthcare by enabling customers to earn royalties by sharing their health data.

President and co-founder Christopher Sealey says that the direct, data-driven financial incentivisation of people in a manner that improves health outcomes and overall health system efficiency is the most exciting opportunity for a radical shift in healthcare financing.

“Irrespective of whether patient data should be ‘owned’ by anyone, it is clear that people should have agency over their health data, which is arguably the most important personal information we hold,” he says. “Every line of health data is a representation of a deep human experience – we cannot forget that. As individuals become more aware of the value of their data to healthcare stakeholders, they will no doubt push to have more control. 

“We believe this is a win-win for consumers and the healthcare industry, as consented patient data streams that put individuals at the center of the value chain will likely hold far more prospective value to all industry actors than the current system, where data insights can be purchased from data brokers without real patient awareness or consent but true engagement is challenging.”

If knowledge truly is power, patients are on the threshold of an era in which they can seize control of the healthcare economy in ways that will completely change their perceptions of value-based health, and the contribution their data can make to its transformation.   

This interview was published in the latest issue of HIMSS Insights, which looks at connected care and interoperability. Healthcare IT News and HIMSS Insights are HIMSS Media publications.