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Calls to improve access to data for research in the public interest

6 July 2020

374 scientists sign open letter to the Information Commissioner, Chief Medical Officers, and UK data providers advocating for reducing barriers to data use.

Calls to improve access to data for research in the public interest

Scientists are warning that urgent improvements are needed to enable research on health, in an Opinion piece published in the BMJ today. The UK has long been a pioneer in developing national administrative databases in sectors such as health, and using them for research in the public interest. However, since the start of the pandemic, research related to COVID-19 has been prioritised, hindering access to data for research on other – no less essential – topics.

Special measures have been taken to accelerate access for COVID-19 research, including suspension of the need for approval under Regulation 3(4) of the Health Service Control of Patient Information Regulations 2002, recognising the public benefit of such research. However, cumbersome barriers are maintained, and have worsened, for research on other topics.

An open letter has been sent to the Information Commissioner’s Office, the Chief Medical Officers of the four UK nations, and UK data providers, asking for four actions to be taken:

  1. Reduce costs of using administrative data to researchers;
  2. Simplify approval processes for de-identified data access;
  3. Reduce data release delays; and
  4. Enable more efficient data use through secure and efficient remote systems.

These barriers mean important research simply is not done when access is denied or timelines jeopardise funding. Non-use of health data or delayed evaluations of public programmes result in important opportunity costs for saving lives – and money.

The above steps are necessary to enable affordable and timely access to data, and therefore produce research which can inform policy and service decisions within a reasonable time frame.

“COVID-19 has highlighted both the value of timely data sharing, and the flaws of UK data systems that prevent agile and responsive research,” says Dr Francesca Cavallaro of the UCL Great Ormond Street Institute of Child Health. “We’ve seen during the pandemic that improving access to data for research in the public interest is possible – it must continue and be expanded to non-COVID research.”

 

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