There are about 55 million patient records held by the United Kingdom’s National Health Service (NHS). Their monetary value to private sector companies would be £5 billion and nearly that much in patient benefits. Add in value for patient outcomes, and the total approaches £10 billion.

In today’s UK:US currency exchange rate, 10 billion British pound sterling is worth roughly $12 billion.

Realising the Value of Healthcare Data from EY explores how patient data can, in the words of the report, “unlock significant operational savings, enhanced patient outcomes, and wider economic benefits” for the NHS and patients through using artificial intelligence and personalized medicine.

“Unlocking the insights contained in patient genomic and phenotypic data is of high value to all the key stakeholders in the health care ecosystem: patients, providers, payers and the life sciences sector,” EY introduces the report. The report then lays out a methodology for quantifying the value of data via two approaches: via a market-based approach, which calculates a per-record valuation for patient data assets; and, an income-based approach, which calculates value based on economic benefit of patient data.

Together, EY calculated that “the curated NHS data set” could yield an annual value of £9.6 bn. Various economic benefits are detailed in the first chart from the EY report.

To “unlock” that value, the NHS and British government would have to collaborate with organizations — private and public — to, in the words of Todd Park, liberate the data and develop patient insights.

It is worth reviewing the Appendices of this report, which detail company-specific use of datasets and estimates of the market value for using that information by company. Some of the names mentioned are Allscripts, athenahealth, Alibaba Health Information Technology Ltd., Atomwise, Antidote Technologies, Alector, Ayasdi — and those are only the “A’s.”

EY rightly notes that the use of the 55 million NHS patient records must conform with medical ethics and research regulations, with patient’s “informed” and “confident” that their data would be used for their individual and public good, safeguarding privacy and rights.

“It is the duty of the NHS to consolidate patient records into the highest quality longitudinal patient level data set, and then to use these data-driven technologies, in a safe, ethical, evidenced and transparent way,” the report concludes.

Health Populi’s Hot Points:  In the U.S., fear of health data privacy breaches is a bipartisan issue, a US Chamber of Commerce/Morning Consult poll found last this week. The survey focused on American consumers’ views on a national health claims database, finding that 94% of Americans believe the privacy and security of their personal health information is important. 8 in 10 Democrats as well as 8 in 10 Republicans agree more research is needed before launching a national claims database.

The issue of privacy, security, and ethical use of personal information has gained traction in the U.S. in the post Facebook/Cambridge Analytica era. This week Equifax settled with the CFPB to the tune of nearly $700 million to address the losses of the 140 million consumers impacted by the breach, and judgments with regulators and States Attorneys General.

In the health/care data ecosystem, stakeholders are addressing the specific challenges related to personal health information (PHI) which HIPAA isn’t covering well in this era of Big Data, cloud computing, and of course, bad actors in the dark cybersecurity breach market.

For example, the eHealth Initiative (eHI) published Guiding Principles for Ethical Use of Social Determinants of Health Data in June 2019, looking at SDoH data that’s so useful for bolstering peoples’ and communities’ holistic health and wellness, but also highly personal. The potential for abusing these data particularly in vulnerable populations was one of the key considerations in developing these principles, eHI articulates in the purpose of the project. Note the broad range of stakeholders involved in this project included major health IT companies, standards organizations (eg., HL7), advocates (eg., American Cancer Association, American Heart Association), pharma and consumer health companies (eg., J&J, CVS Health, Lilly, Walgreens), providers and plans (Wellmark, Mayo Clinic, Marshfield Clinic), government agencies (eg., NIH), and tech companies like Salesforce, Validic, AWS (Amazon) and Google Cloud.

This week, another relevant report with the word “ethical” in the title was published by MITRE: An Ethical Framework for the Use of Consumer-Generated Data in Health Care. The principles underlying MITRE’s framework are shown in the list here, including fairness, individual and population health, autonomy, empowerment, accountability, transparency, data protection and security. These couple with values: distributive justice, health, self-determination, privacy and trustworthiness.

MITRE defines consumer-generated data (CGD) as individual lifestyle or behavior data created by a personal engaging in a “non-clinical commercial, participatory or social activity.” CGD are generated by retail store loyalty card transactions, credit card charges, social media posts, IoT devices, and via sensors like activity trackers.

What’s not CGD are data covered by HIPAA.

The reality of U.S. (and U.K.) patients is that we generate data every day that can help bolster our help…or be used in discriminatory ways. In the U.S., HIPAA has leakages which compromise Americans’ ability to trust the use of these data (SDoH, retail receipts, et. al.) without greater protection. I discuss this challenge and the need for a GDPR-like law to replace our quaint privacy patchwork quilt in the chapter “Privacy and Health Data In-Security” in my book, HealthConsuming.

Now, let’s hop back across The Pond to note that today, Boris Johnson was anointed the next Prime Minister of the United Kingdom.

Johnson was one of the key Brexiteers, advocating for the UK to leave the European Union. Now, he leads the UK in this post-Brexit moment, deal or no deal, scheduled for October 31, 2019.

One of the issues on Johnson’s pro-Brexit platform was for the National Health Service to benefit from the EU exit and re-funding £350 million a week to the NHS. President Trump had discussed U.S. health care system collaboration with the NHS in a post-Brexit scenario, described in this New Yorker article. In this take from The Hill, President Trump is quoted as saying that “everything should be on the table” for a new U.S.-U.K. trade deal — including the NHS.

Now, take a look at Stephen Fry’s analysis of the U.S. health care system in the context of Brexit. You know Stephen Fry from his brilliant writing, acting and comedy – he’s a polymath. Fry has been well aware of Boris Johnson’s thoughts on Brexit and the NHS, potentially jeopardizing the fate of the Service — arguably the world’s most popular public institution.

Check out Fry’s video here, explaining the U.S. health system better than most Americans could do…including me!

Even in these fractured political moments, there’s one important issue on which U.K. and U.S. patients concur – that is the value of their personal health information, and need for trust, privacy, security, and transparency. EY’s report brings more light to the complicated balance between data altruism and the positive use of data for patient and public good, and the potential abuses by commercial companies.

1 Comment on The Monetary, Clinical and Ethical Value of Patient Data – A View from the UK and NHS

HealthPopuli.com said : Guest Report 4 months ago

[…] as I discussed in yesterday’s post on the financial, clinical and ethical dimensions of patien…, companies must earned and sustained peoples’ trust to engage them in their health care. […]

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