In April I attended a roundtable discussion ‘Building trust in the use of personal data for medical research’, an event which was jointly hosted by the ABPI and the All-Party Parliamentary Group on Medical Research.
A range of organisations attended, which included the Association of Medical Research Charities, NHS England, the Department of Health and the Wellcome Trust. The discussion focused on ways to foster greater trust in care.data and other initiatives which use personal medical data.
There were four areas of discussion: the sharing of patient data and building trust; the value of personal data in research; the use of health records in medicine development, and the need for robust safeguards and controls.
The Government’s ‘care.data’ plan was established to aid medical research and to allow the NHS to use high quality information to improve patient outcomes. It will expand the NHS’s dataset from the current collection of hospital data (HES – Hospital Episode Statistics) to include data from GP practices. Third party access to these health records has been contentious and recently healthcare professionals and the public have raised concerns. This led to NHS England delaying the launch of care.data. Critics have expressed concerns about the security of the data and its ability to be used for purposes other than anonymised medical research, in particular for commercial purposes such as by insurance and pharmaceutical companies. Unsurprisingly, the reports of the NSA’s activities, the revelations by Edward Snowden and various banking scandals have been troubling, so it is understandable if we don’t want our data to be shared without full and proper explanation of what the programme entails.
As the first topic of discussion at the roundtable highlighted, building trust with patients about the use of personal data is imperative. We need to be able to demonstrate that, through responsible data sharing, we in the pharmaceutical industry can bring leading edge treatments and technologies to patients, and re-establish the UK as a global leader in the life sciences. We also need to set the record straight on some misconceptions – for example, many people do not realise that it is illegal for pharmaceutical companies to market directly to patients in the UK. This means that having access to patients’ data will not lead to targeted adverts to patients for prescription medicines.
Health data used by industry for research purposes allows us to identify areas where there are no suitable treatments available or, if they are available, to look at whether they are being used in the best way. Analysis of health data in the NHS can help to ensure that patients are getting access to the right medicines, at the right dose, at the right time and to monitor the outcomes. Additionally, testing medicines on groups such as pregnant women is not appropriate, but analysis of anonymous medical records can provide a different way for us to understand the risks and benefits of any treatments that are used in pregnancy.
One topic of intense discussion at the roundtable was the need for robust safeguards and controls. This is something everyone agreed is needed if we are going to get to a position where patients feel secure with the use of their personal data. It is crucial to have strict safeguards in place to protect patient confidentiality and we are supportive of strong governance and safeguarding procedures in order to protect patient confidentiality whenever engaging in electronic record data sharing. The pharmaceutical industry has long been accustomed to safeguarding and protecting patient confidentiality for participants involved in clinical research and through the well established Clinical Practice Research Datalink (CPRD).
The UK is well positioned to lead the world in integrating data at every single step of the value chain from early discovery to distribution and supply chain, and we need a focus on creating awareness of the value that can be derived from medical data. I hope discussions and debates, like the ones at our roundtable, help to normalise the debate and help achieve a better understanding of the true benefits that can be derived from a partnership between medical researchers, the NHS and patients.