Why a patient-centric approach is necessary for data governance in the healthcare sector

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Benjamin Akintunde Akinmoyeje, Fellow, Datasphere Initiative

How health data is governed is a core component of the digital transformation of the healthcare sector and the expansion of “digital health”¹. Data governance plays not only a key role in a patient’s health outcome, but also allows for data to be incorporated into various research and innovation processes. 

The promises that digital health and health data portends has drawn increasing attention from various stakeholders in the last decade, who are interested in understanding and gaining access to the benefits and value generated by digital health. In this blog, and as part of my fellowship at the Datasphere Initiative, I attempt to analyze the view of the patient by exploring a “patient-centric” approach to data governance and its value proposition, with special focus on the evolving data economy in Africa.

The benefits of health data at – potentially – everyone’s reach 

Digital health is at the cusp of a breakthrough. Investments in startups in the field grew to $29.1 billion in 2021. Yet the field is not uniform – Digital health is a broad term, covering a spectrum of activities from the digitization of health records to “born digital”² data enterprises based on wearables, with a vast territory of digital transformation and innovation in between. Digital health promises the ability to capture and weave together observations from patients’ visits to the doctor’s office all the way to our body movements and daily choices.

Digital health promises a new paradigm of health care, from precision medicine, to better diagnosis, improved preventive care, and, in general, more effective healthcare provisions. It combines increasing adoption of cloud resources and increasing interoperability of data types across systems. Additionally, new artificial intelligence and machine learning techniques promise an increase in our ability to analyze the increasing amount of data becoming available daily. And in theory, this – more data-based information and potentially new knowledge –  should all drive better diagnoses, better implementation of treatment plans, and new therapies and treatments – all potentially at a lower cost. 

An uncertain but optimistic future

However the reality is that we don’t yet know what the future holds for digital health. Digital health real-world impacts – as measured by the revenues of companies going public  – are not yet matching their high valuations. IBM’s Watson is reportedly for sale, at a price far below the investments made in it. But the fact remains that digital health gives us a level of capabilities which were unimaginable just a few years ago. And the pandemic has clearly shown that digital health can help physicians work more efficiently to address their patients’ diagnosis through the use of Telehealth, chat, and providing resources matched to queries. 

Unfortunately, digital health as it is currently practiced often requires computational resources that are commonplace in the global North,  – but are not readily accessible in Africa be it because of lack of enabling infrastructures and expertise, or due to high costs (e.g. supporting 40 hours of machine learning per week at Amazon comes to $USD 800 surprisingly quickly).

Taking patient consent seriously

With the expansion of digital health and the growing scope (and fragmentation) of the regulatory regime around data (e.g. privacy laws, health privacy laws, ethics and more) the health industry has developed a variety of documents and processes to share information on patients rights and  gather patient consent. 

The primary purpose of consent – and also “informed consent”³ – is to obtain the agreement from the patients to certain collection and uses of data beyond the direct and immediate treatment or research, but its promises also go beyond that, as it should also relate to generating benefits for patients, and in some cases, setting an access and benefit sharing regime. However, often the tangible benefits are hard to see and access or to be counterbalanced with related risks. For instance, patients do not directly gain from different digital health innovations that their data has enabled, and better treatment or a “cure” might take decades to become available. On the other hand, patients have been continuously affected by the increasing number of sensitive data leaks and cybersecurity risks faced by the digital health sector. 

Increasing frustration has generated new movements focused on new property rights over data, and a stronger push for more immediate access and benefit sharing schemes, as well as patient-centric approaches to digital transformation and data governance models in the healthcare industry. 

In a patient-centric approach, data governance should start by including patients at the design table to discuss its processes, norms, goals and which benefits are expected to be shared. Additionally, under a patient-centric data governance and digital health, health data collecting tools would embed more attributes that reflect patients’ values – including reflecting specifically sensitive local values, rather than solely reflecting commercial goals and values. 

The case of Africa

The increased digitization of healthcare in Africa, accelerated⁴ as well as the deployment and adoption of electronic medical records during the COVID-19 pandemic, has opened great opportunities for the entry of new commercial actors on the continent, especially for born-digital companies that are not highly dependent on local facilities. 

Health is a fundamental right, and thus a patient-centric approach from the start is highly desirable. The African continent has the opportunity to get this right within this nascent sector in the region. Longstanding international conventions on biomedical research and medical ethics also support a patient-centric approach and, in Africa, we have an opportunity to translate these into the digital era, in order to truly benefit patients.

This translation of international norms should then incorporate local principles and values that respect local sensitiveness, such as the Ubuntu (humanity), Umoja(unity) and others as identified in CLEAR-AA and MERTL Tech (2021) “Responsible Data Governance for Monitoring and Evaluation in the African context”.

Looking forward

The ultimate objective of advancing digital health should be improving patient care. And for that a patient-centric approach is key. This patient-centric approach is also aligned to the concept of a Datasphere, where we move from a siloed approach to data into an approach that clearly relates and understands the actors, the norms and the data involved, and aims to design the best set of policies for the wellbeing of all. 

We must consider patients as critical stakeholders in digital health who are included in the collective design of ethical, law-abiding, transparent and benefiting data governance frameworks and tools, not just a passive research object of digital health technology.

¹WHO (2021), “Digital health is the convergence of digital technologies with health care to improve healthcare delivery and patient outcomes”, World Health Organization, https://www.who.int/docs/default-source/documents/gs4dhdaa2a9f352b0445bafbc79ca799dce4d.pdf

²Born-digital enterprises are “a generation of organizations founded after 1995, whose operating models and capabilities are based on exploiting internet-era information and digital technologies as a core competency.

³Brach, C. (2019), “Making informed consent an informed choice”, Health Affairs Blog, shorturl.at/cmLO2

⁴CLEAR-AA and MERL Tech (2021), “Responsible Data Governance for Monitoring and Evaluation in the African Context. Part 1: Overview of Data Governance and Part 2: Guidance for Responsible Data Governance in Monitoring and Evaluation.” University of the Witwatersrand, https://merltech.org/wp-content/uploads/2022/01/Responsible-Data-Governance-for-ME_part-1.pdf