A new paper calls for anonymised health data to be made more readily and securely accessible for research in the public interest. Current delays risk potential harm as researchers are forced to use out-of-date information that may be actively misleading
The challenges and opportunities of mental health data sharing in the UK, recently published in The Lancet Digital Health, recognises that privacy and confidentiality need to be jealously guarded, but that access to data, already collected by the NHS, for the purposes of mental health research will help inform policy, practice and improve health and well-being.
The paper follows the recent announcement by NHS digital that they will be making anonymised health data available for research. An announcement that has been met with controversy from privacy campaigners. The paper was facilitated by MQ Mental Health Research and authored by a large group of experts including Professor Tamsin Ford CBE from Cambridge University and Dr Karen Mansfield from Oxford University.
Recognising the need for ethical and relevant access to data, along with concerns around privacy, security and GDPR, the paper makes a number of recommendations including:
- Creating a national process for data access that balances the risks of privacy breaches with the benefits to science and health policy.
- Establishing an All-Party Parliamentary Group to review how data can be safely and legally accessed by researchers.
- Ensure there is transparent, consistent, uniform, and clear information for data custodians about how data will be used.
Co-author Sarah Shenow of MQ Mental Health Research said “Problems with accessing data are preventing researchers from making breakthroughs that will improve people’s mental health. These problems have increased in recent years. Solutions to these roadblocks are urgently needed. This important paper outlines the critical issues in accessing data and their implications. The current administrative situation is potentially devastating to the progress that mental health data science has made.
“Problems with accessing data are preventing researchers from making breakthroughs that will improve people’s mental health. These problems have increased in recent years. Solutions to these roadblocks are urgently needed."
Research activity is grinding to a halt and the next generation of data scientists is being deterred. These problems with accessing data are undermining the opportunities for breakthroughs that would improve people’s lives.“
Having access to administrative data such as that collected by the NHS has already been of huge benefit to research, as demonstrated through a scheme run in Wales called the Adolescent Data Platform. This programme, run by Professor Ann John of Swansea University and funded by MQ, used data from the NHS, schools, local authorities and social services to identify and monitor trends in young people’s behaviours and health.
“We know how important it is that people understand how their data is used and feel comfortable. This is why we will work closely with the public, patients, and those with personal experience to ensure these open conversations happen and that the highest standards of data security and privacy are met.”- Professor Ann John
The paper highlights the importance of ethical access to data for the advancement of knowledge for public benefit. It highlights the increasing problems that researchers have had in accessing data. It also examines the short-term benefits that having rapid access to data can have.
“With due respect to privacy and confidentiality, analysis of real-word data really can improve and even save lives – we have a responsibility to ensure that it can be appropriately used.” – Professor Tamsin Ford
Rapid access to relevant data is especially important to understand and mitigate the negative effects of the COVID-19 pandemic.
There is a growing need for data science skills, yet students and early career researchers often do not have time to spend on applying for data, diminishing recruitment and the training of individuals in such skills. Faster access requires less bureaucracy.
The paper was reviewed by Professor Andrew Macintosh from the University of Edinburgh who is not an author:
“This important and timely paper by Ford et al draws our attention to the challenges of accessing health data for mental illness research. In many cases, these data were provided by participants who took part in studies with the expectation that their efforts would help others, but who are being let down by systems that are difficult for researchers to navigate and fraught with delays and difficulties. In other cases, de-identified NHS data that is more representative of the people who are in greatest need of new treatments, cannot be accessed because of bureaucratic, onerous, and lengthy access procedures that fail both researchers and the public and patients they seek to serve.
The UK and its devolved nations are greatly underplaying their potential to improve the lives of people with mental illness by not providing the capacity, expertise, and infrastructure to support mental health data science. This article highlights the remedial actions needed to overcome these issues that will allow the UK to further its prominent role in health data science.
