Enabling Data Philanthropy for Health and Care

15th March 2018 about a 8 minute read

In our report Intelligent Sharing: unleashing the potential of health and care data in the UK to transform outcomes, we recommended a number of measures to promote and facilitate what we termed ‘data philanthropy’, and the passage of the Data Protection Bill through Parliament affords us a timely opportunity to explore how Government might implement some of them in practice.

What is data philanthropy?

There are a number of competing definitions, but we take ‘data philanthropy’ to mean:

  • an informed contribution of data to a trusted vehicle by an individual data subject for mutual benefit; or
  • an informed contribution of data to a trusted vehicle by an individual data subject for public benefit; or
  • a data/data insight donation to a trusted vehicle on the part of a corporate entity – allowing it to “give back in a way that produces meaningful impact and reflecting the businesses’ core competencies, while preserving or expanding value for shareholders” (Stempeck, 2014).

It reads across, then, to distinct forms of ‘trusted vehicle’ that are designed to harness ‘data for good’ – which, for our purposes, means facilitating research and innovation to transform health and care outcomes.

In our report, we explored member-controlled ‘data cooperatives’ and ‘data communities’ operated by trusted intermediaries to facilitate data philanthropy on the part of individuals – in recognition of MiData Coop initiative in Switzerland and the success of the UK Biobank. We also looked at what are commonly referred to as ‘data collaboratives’, which involve private sector organisations donating and/or analysing the data they control, to explore data philanthropy on the part of corporate entities. Here, notable examples include private enterprises supporting the UN Global Pulse initiative and Strava Metro. Ultimately, we believe a range of ‘trusted vehicles’ that reflect the values of different individuals and corporate entities could usefully be established to further research and create the conditions for innovation with the aim of transforming health and care outcomes.

Why promote data philanthropy for health and care?

We welcome the introduction of provisions to the Data Protection Bill that are designed to facilitate peer-to-peer support amongst groups characterised by particular conditions and/or disabilities. However, there is otherwise a manifest lack of provision to underpin collective action for mutual and/or public benefit in the Bill, and we have recommended the Government considers introducing measures to promote and/or facilitate ‘data philanthropy’ for the following reasons:

Trust: there is already considerable support for ‘data philanthropy’ on the part of the general public where the aim is to further research in relation to health and care, but we believe the Data Protection Bill could function to proactively build trust by affording data subjects concrete opportunities to take a digital stake in society – in accordance with their values and irrespective of their socio-economic status. The Bill could also do more to recognise the role that businesses can play in stewarding well-being, by championing bespoke permissions and ‘trusted vehicles’ in relation to the re-use of privately controlled data for public benefit. It would then better reflect the UK Digital Strategy, which states that Government will ‘encourage innovative uses of data by making it easier, where possible, to access and use data held by both government and businesses’ (DCMS, 2017).

Size: whilst the UK benefits from unique health data sets which are of interest to researchers right around the world, most real-time data capable of indicating a person’s wellbeing (or otherwise) is currently vested in privately controlled and siloed data repositories. Moreover, the larger a dataset is, the more valuable it becomes – in particular, where machine learning and the development of Artificial Intelligence is concerned. Measures to promote and/or facilitate ‘data philanthropy’, both on the part of individuals and corporate entities, could serve to grow the overall quantum of data made available for research and innovation in relation to wellbeing and, with that, enhance the UK’s competitive edge in relation to comparable endeavours being pursued by countries that benefit from comparatively larger populations.

Quality and Scope: increasing the size of a dataset generally allows for extracting greater value from it, but this might not happen if ‘trusted vehicles’ are left to deal with low quality data [Carballa Smichowski, 2018]. Moreover, the capacity to link several datasets and the capacity to use a single dataset for several purposes render it more valuable still, because they increase the possibility of making good ‘descriptions, explanations, predictions and prescriptions’ [Chignard & Benyayer, 2015]. Therefore, whilst the Data Protection Bill and GDPR provide for individual Subject Access Requests and enhancements to ‘data portability’, the quality and scope of data that a ‘trusted vehicle’ might attract in promoting a standalone opportunity for ‘data philanthropy’ to individuals – on the basis of ‘explicit consent’ and in the absence of legal assurances and/or open standards and APIs – is questionable. A Government-backed data donor bank or data donation scheme could help to overcome these critically important issues.

Ultimately, our rationale for championing ‘data philanthropy’ and ‘trusted vehicles’ flows from our aspiration to effect a step-change in health and care outcomes in the UK. If we are able to harness Voice Assistant data from Alexa and kindred devices for the purposes of conducting research, might we be in a position to identify and better support people struggling with early onset dementia or mental ill-health at an earlier stage? If we increase access to the loyalty card scheme data currently collected by retailers for marketing purposes, might we be better placed to devise new interventions with which to help tackle obesity?

The possibilities are seemingly endless but are less likely to be realised – unless we empower individuals and businesses to play an active role in stewarding well-being in our digital age.

Practical Steps to Enable Data Philanthropy

In our report, we made a number of recommendations about promoting and enabling ‘data philanthropy’, and the Government could take practical steps to introduce them in the course of the Data Protection Bill’s passage through Parliament:

  • It may be appropriate, for example, to introduce a ‘duty to review provisions for data philanthropy’ upon the Secretary of State for DCMS. Alternatively, the Government could simply expand the opportunities for data subjects to contribute data to electronic health and care records and other data sharing initiatives by introducing a ‘right to donate data to a third party to further research and innovation in health and care’ in the section of the Data Protection Bill concerning ‘rights of the data subject’.
  • The Government could commit to explore the development of a ‘gift-aid’ style scheme for data so as to encourage and facilitate data donations to further research and innovation in health and care. The National Data Guardian could, for example, be required to investigate the circumstances in which it may be appropriate to invite the giving of explicit consent to the processing and pooling of personal data for the purposes of research and innovation in health or social care. Alternatively, the Government could add to provisions concerning Subject Access Requests and ‘data portability’ so as to mandate that businesses invite people to give their explicit consent to donate their data to a recognised third party in order to further research and innovation in health and care integral to soliciting consent in relation to their standard terms and conditions of service.
  • The Government has welcomed our call to explore the development of ‘trusted data exchanges’ – most recently, in its endorsement of ‘Data and the Future of Health and Social Care’ [March, 2018]. It has also taken note of the issues raised by Baroness Neville-Jones during the Data Protection Bill’s Second Reading in the House of Lords – when she asked the Government to “think about the possibility that they should allow for the creation of governance and accountability regimes that will fit special circumstances” – adding that “the existence of the Information Commissioner should not result just in enforcing the law effectively and well; it should provide an opportunity for creativity under her auspices and the ability to create variations on governance regimes where they are needed”.

We support this sentiment and provisions that would further support the creation of ‘trusted data exchanges’ for health and care, underpinned by ‘data philanthropy’ and creative approaches to lawful consent. The Government could, however, go further and introduce provisions for ‘trusted data exchanges’ to be recognised in law as not-for-private-profit vehicles designed to safeguard data donated for the purposes of research and innovation in health and care. This would constitute a bold move and attest to the Government’s ambition to support the evolution of public, private and third sector organisations alike in the digital age. In particular, it would recognise that we currently lack a legal vehicle which benefits from the digital equivalent of the tangible ‘asset locks’ that are applicable to established charities.

There is, then, considerable scope for the Government to take action to better enable data philanthropy in the interests of transforming health and care outcomes – and there is, perhaps, no better time than at present.