Chaired by Lord James O’Shaughnessy and Professor Mike Bewick, the first inquiry session of the Commission took was held on the 28th June. This session focused on fostering the health data ecosystem, bringing together the recommendations of leaders in healthcare, life sciences and local government/regional authorities.
The inaugural inquiry session of Curia’s NHS Innovation and Life Sciences Commission contained a rich discussion of health data, aided by the distinguished panellists of thought leaders in this space.
The second half of this inquiry session focused on the wider health data ecosystem and the commercialisation of patient data for NHS benefit. The panel for this session included:
• Dr Ben Goldacre MBE, Director, Bennett Institute
• Shane Tickell, CEO, Temple Black
• Professor Cathie Sudlow, Director, British Heart Foundation Data Science Centre
• Dr Maureen Baker CBE, Chair, Professional Record Standards Body
• Tim Sheppard, SVP & General Manager, Northern Europe at IQVIA
Commercialisation of data to generate value for the NHS
Shane Tickell opened on the topic of commercialising data in a fair and effective way, noting that citizens should be willing to have their data used as it does not cost the individual anything but the wider importance of sharing this to the NHS and ecosystem needs emphasising. Commercialising personal data is perfectly reasonable if we can directly demonstrate the value it is bringing to the NHS, including improved services, better outcomes etc.
Tickell also argued for a ‘pence per citizen’ model, unified and encouraged into the workings of ICSs to ensure clarity and prove that value is indirectly going back to the population. This would also allow levelling up of health outcomes and inequalities between areas.
Ben Goldacre added that the existing model of “disseminating data to different sources” has caused issues around protecting patient privacy and highlighted the moral questions of commercialisation. It is feasible that we can assure the public that their privacy is protected, and further ensure the NHS will receive benefit from a commercial company using this information. Goldacre also noted the importance of ‘deep-dives’ such as citizen’s juries to find out and validate these processes. It is extremely important to evaluate which actors have injected the most value into the service within the innovation pipeline. It is important to strike balance that allows commercial companies and the NHS to capture value as public databases are used.
Professor Cathie Sudlow added that there are large, consented research studies which service as good models for how to attract inward investment and yet output benefits to the global population. She noted the UK biobank as a UK success story.
Tim Sheppard emphasised the need to keep the barriers to entry as low as possible, but also noted there is a need for a test so that researchers can demonstrate the benefit to the NHS. If researchers are asked this question and must articulate what that value is, ensuring patients are happy with commercialisation is achievable. On our comparison internationally, Sheppard noted other countries are boasting of there data environments to encourage research and explained there is no reason we cannot achieve the same.
Maureen Baker emphasised the need to incorporate the views of professionals as well as patients. As a vital part of the health data equation, Baker explained the professional voice is essential to foster the data infrastructure needed to improve population health.
Ensuring data use is supported by patients and attracts life science investment
Baker opened this topic highlighting the reality that professionals are extremely sceptical as such schemes have previously failed to capture the view of patients and the dangers around personal data. There is a need to incorporate patient and professional views throughout the data ecosystem. On the potential of a shared decision-making process, Baker explained the Patient Records Standards Body (PRSB) shared decision-making standard and the need to engage all relevant stakeholders within decision-making.
Tim Sheppard highlighted that the unclear nature of how data is accessed and the rules around it has hindered attracting global researchers. Spelling out the rules in which TREs access data for global researchers is needed and a level of consistency is required to establish confidence. This will further reassure patients that their data is being used appropriately and consistently. On the ‘opt-in, opt-out’ dilemma, Sheppard explained the technology exists to inform patients every step of the way and they can opt in and out as they please. He felt that by giving them the option, trust is built.
Ben Goldacre stated the need to be cautious in creating the governance frameworks, citing the example that his review found 6000 GP practices were left to make decisions separately on data access. He explained the issue of “overwhelming individual choice” in attaining consent for every use of patient data – establishing trust between patients and practices using their information is a sensible direction.
Ensuring privacy and security of patient data to scale TREs
Professor Sudlow explained the lack of a ‘one size fits all’ to different data use cases, some requiring only aggregate data and others being far more specific. She noted the need to think through what structures are required within TREs to enable diverse types of technical solution.
Tickell argued that there is the technological ability and duty to provide security on patient information, citing the ability to anonymise and deanonymise data for the right access. However, as a sector this is currently imbalanced. Tickell explained his personal experience of holding data on over 500,000 diabetic patients in North West London, yet with the multitude of email addresses and phone numbers for each patient, 98 per cent of those patients were not being communicated with. He also noted that both healthcare and informatic professionals should be trusted with data, but also held accountable.
Enabling patient agency and control
Goldacre opened this topic stating the most important starting point is to stop sending copies of patient data to unknown and uncountable destinations. He explained that previously failing to recognise this had resulted in 1.5 million people opting out of their data being used and another 1.5 million people last year. Goldacre noted colleagues have come round to this understanding and hopefully these lessons have been learnt by the sector. His current concern lies with the suggested “data aggregation projects,” with public trust damaged over privacy issues of the past.
Regarding TREs, Goldacre explained the NHS must implement this at the heart of their structure. TREs must be shared environments, have privacy preserving tools and hold absolute transparency about every action performed with the data in question. Implementing this will build public trust, noting that they hold support from professional groups and previously hostile campaigners such as medConfidential. He finished by stressing that “endlessly asserting what we do is good is going to get us nowhere.”
Professor Sudlow added there is a need for this to be implemented in a language that is accessible, to place health data sharing in a context that all patients can understand. Maureen Baker added that there is a tendency within the sector to assume people know what ‘health data’ is. Therefore, NHS leaders must outline a narrative to provide this accessibility without assumptions and jargon.
On the data pact, Tickell stated the name should be changed from a ‘pact’ to a ‘promise.’ The NHS and stakeholders in health data assume that people will want to give access to their data, but this will only come after showing a track record of respect and care. He added the importance of providing an ability to opt in and out throughout their healthcare journey – this will allow granting access to individual patient data to appeal to the majority.
In closing, Professor Bewick and Lord O’Shaughnessy thanked panellists and attendees for joining the session. Mike Bewick concluded that the discussion brought the Goldacre Review into a valuable perspective for the Commission and emphasised previous points on the targeted use of data and including professionals into the conversation. James O’Shaughnessy also highlighted the discussion on demonstrating security and patient benefit to establish trust and confidence.
Final thought
The second hour of the session added an important component to the discussion – the integration of industry into the health data puzzle. It is clear in order to foster the health data infrastructure, the life sciences industry must have a stake in solving the issue. The issue of commercialisation is complex, with the access of patient information to provide profit for corporations an uncomfortable subject.
Shane Tickell and Ben Goldacre made important points on the need for transparency when patient data is used in this way. Principles of ‘opt-in opt-out’ are essential to ensure patient trust, and the public should be encouraged to allow access of their information if it is clear value is going to the NHS.