Patient confidentiality must be protected as part of new government proposals to boost the life sciences industry say doctors’ representatives.
Data from patient records could be shared with private companies as part of a move to boost biomedical research. A consultation to change the NHS Constitution is being launched so that patient data is automatically included in clinical research, but with patients being given a clear opportunity to opt-out if they wish.
Dr Vivienne Nathanson, head of science and ethics at the BMA, commented: “The use of anonymised health data could benefit patients, but we are concerned that elements of the government’s proposals could, if implemented, undermine patient confidentiality.
“We are especially worried by recommendations that would grant researchers, possibly from large commercial companies rather than the patient’s healthcare team, access to patient records. This could mean that details of an individual’s health status and treatment will be revealed if researchers are able to search through records and identify patients in order to contact them.”
Patient representatives reacted more strongly, with Patient Concern’s Roger Goss saying it signified the “death of patient confidentiality”.
The aim to better use the vast amount of clinical data harvested from the three million patient contacts that occur each day in the NHS.
Ministers want to attract further investment to the life sciences sector in the UK, which is already worth £50bn a year and employs 160,000 people.
David Cameron also announced a £180m fund to boost translational research, turning laboratory breakthroughs into commercial products.
The government also wants to deploy remote medical devices - such as home-based equipment that can send details of the vital statistics of at-risk patients directly to doctors - to 3 million people over the next five years. And it wants to put in place a new ‘early access scheme’ which will put new drugs and technologies in NHS hospitals more quickly - particularly for brain and lung cancers.
NHS chief executive, Sir David Nicholson, said: “The challenges the NHS faces to improve quality and productivity in the coming years means spreading best practice fast is not an optional extra, it is an operational necessity.
“The review gives us the tools to do that job by removing the barriers to spreading innovation and creating new local partnerships - Academic Health Science Networks - to support delivery. It sets out areas where there are particular opportunities for improvement, for example putting technology in peoples’ homes to help them manage their own conditions. It represents a call to action for everyone in the NHS to make innovation a central priority.”
Further measures recommended include the launch a new app and web portal providing a database of where clinical trials are going on. Members of the public will be able to log in and ask to participate. And a new requirement that all NICE Technology Appraisal recommendations are incorporated automatically into relevant local NHS formularies in a planned way that supports safe and clinically appropriate practice.
Minister for Universities and Science David Willetts said: “Our life sciences industry is a vital driver of growth and employs tens of thousands of people. But it is rapidly changing. We need to keep ahead of the game and make the UK one of the best places for companies to invest in innovation.
“To do this we need to create the right environment for scientists and business to work together and translate research into new, cutting-edge technologies and medicines. This will this boost our economy, create new jobs, and lead to better treatments for patients.”
The BMA’s Nathanson added: “It is encouraging that the government has recognised the importance of the life science industry to both the NHS and the wider UK economy. This vital sector already contributes significantly to the financial livelihood of our country and has the real potential to provide further benefits during this tough economic period. Patients also benefit from the new treatments and drugs that are devised by hard working clinical researchers.
“The BMA will be examining these proposals carefully. We believe that patient records must be kept confidential and be anonymised if they are to be used for research purposes unless explicit patient consent has been obtained.”
