A colleague in the office sent me a link this week to a piece by Professor Anthony Mathur on the BBC Online’s ‘Scrubbing Up’ pages in which he argues that if people want treatment for a heart problem, they should be obliged to take part in the research.
The very same day I got home to a letter inviting me to take part in UK BioBank.
And at the end of last month NHS Connecting for Health published their ‘Summary of Responses to the Consultation on the Additional Uses of Patient Data.’
The common theme in all of these, of course, is the issue of patient consent.
I felt a good deal of sympathy when I read Professor Mathur’s piece and the frustrations he and his colleagues feel in getting patients to volunteer for clinical trials and research. His comment piece relates to a particularly difficult set of circumstances but his observations are not dissimilar to those that you will hear from clinicians and researchers in other areas. In his conclusion he recommends a new contract between medicine and society.
In one sense we do have the opening clauses of such, with the new NHS Constitution and its proposals on the use of patient records for research. And now the Government is following through on the pledges in that document. When publishing the report of its public consultation mentioned above the Department of Health said:
“It is clear that the public expects their consent to be sought if the data used is identifiable. This means we need to test out how best to secure that consent and properly inform patients about the use of their identifiable medical records. We intend to set up a number of pilots in Hampshire, the Isle of Wight, Birmingham and Nottingham which will explore means of patients opting out of having their records viewed for research purposes. We will report back on testing and offer a preferred mechanism by June 2010.”
That pilot will be important in identifying the right mechanisms for gaining such consent. But equally important is the need for us to put good information in front of patients and the public consistently and in all health care settings about why their participation is so important.
Indeed, my sense is that medical research charities feel frustration equal to Professor Mathur’s, but for somewhat different reasons. Faced with patient populations eager to be part of a clinical trial, they not only find it difficult to know where to direct people but they also lack good information which is going to give a person the knowledge and confidence to follow-through on their interest.
I hope this is work that AMRC will be able to pursue with a range of partners in 2010.