Care.data and Its Discontents
On the 6th July it was formally announced in the House of Lords that the care.data programme would cease to continue as it was originally set up to do. In making this formal announcement, it was stressed that notwithstanding the decision to bring the care.data programme to a conclusion:
the government and the health and care system remain absolutely committed to realising the benefits of sharing information, as an essential part of improving outcomes for patients. Therefore this work will now be overseen by the National Information Board, in close collaboration with the primary care community, in order to retain public confidence and to drive better care for patients.
The following statement in the announcement is important:
The National Data Guardian Review also recommends that the Government consider the future of the care.data programme, as the consent and opt-out model proposed by the review goes further than the approach that was planned for care.data and its pathfinder areas.
The Government has rightly accepted the recommendation. Care.data had all the hallmarks of an accident waiting to happen of Shakespearean proportions. If one were to view both extracts together, it should make us pause and reflect: Why did the care.data programme flounder? Why was the public sceptical given the well-known benefits and opportunities? Strong concerns raised about care.data programme voiced by the Royal College of General Practitioners, the British Medical Association and Healthwatch England contributed to the decision by NHS England to pause the programme in February in 2014. Can we learn from the mistakes of the past? Do we need to change our mindset? How should policymakers and NHS Trusts engage with the public? These are some of the questions that will be explored in a forthcoming Workshop on 20th September - invitations to submit position papers are now open. In the coming weeks, I will post thoughts based on media reactions to the Caldicott Recommendations, scholarly and industry reports relevant to the Workshop.
Dame Fiona Caldicott has provided the clearest possible signal. The National Data Guardian for Health and Care: Review of data security, consent and opt-outs (2016) recommends a new consent/opt out model, advocates strong sanctions for data misuse and advocates the implementation of 10 new data security standards. The Care Quality Commission's recommendations, Safe data safe care: report into how data is safely and securely managed in the NHS (2016) also point to the need for embedding an information security governance culture within the NHS.
Both reports and their recommendations are particularly indicative of the need to go beyond the patient empowerment rhetoric and the importance of being alert to the dangers of technological solutionism. Failure to engage the medical profession and patients throughout the entire policymaking and implementation phase is a recipe for failure, no matter how well meaning the intentions might be. If we are to move forward, it is also important that we do not treat all patient health data equally - health data has an exhaust problem. The focus of programs such as care.data and the Caldicott Recommendations (to some extent) tend to given the impression that all data has equal value. Perhaps, we should spend some time working through carefully the problems we are trying to solve rather collecting all data and sticking our fingers in the air for medical and therapeutic inspiration. More data and access to all health data does not necessarily lead to innovation and improved delivery of direct care. If public trust is to be earned, it may not be a bad idea for the post-Consultation period to be devoted to identifying the problems to be solved and what data needs to be accessed and used. In a recent article in the British Medical Journal, Big health data: the need to earn public trust (2016, 354, 16 July I came across a passage which may be of interest. Here is what the authors say:
Care.data failed to earn the trust and confidence of patients, citizens, and healthcare professionals. An analysis of opinions reported on Twitter showed that people had concerns about informed consent and the default “opt-in”; trust; privacy and data security; the involvement of private companies; and legality. The information campaign about care.data was not clear about how the system would work, including the opt-out arrangements and the sharing of personal information with commercial organisations,and at times downplayed the potential benefits.
What this observation also illustrates is that any model for consent/opt out must not be founded on rigid rules but preceded by clear and meaningful explanations that relate to patients real (and not theoretical) concerns. As we lead up to the close of the Public Consultation (7th September) - NHS Trusts will do well to interact with their patients and communities now. This is where the process of gaining the public trust begins - a culture that the NHS knows best is unlikely to be beneficial in the long term. Over-complicating the consent/opt out process, lack of transparency and uncertainty surrounding the rules governing commercial access and use of health information erode trust. The NHS is a fabulous institution - would it not be better to re-imagine public health that is right for us and draw on cherished values of humanity rather than have the conversation curbed through the norms of the invisible hand of the market?