My Lords, I welcome the Government’s decision in Amendment 167 to support the recommendation of the Joint Committee on promoting transparency in research and ensuring full publication of the results of research consistent with patient confidentiality. It is right that this should be a statutory objective of the Health Research Authority. The arguments in support of this at the Committee stage from noble Lords were very compelling and, since then, have been strongly reinforced by the House of Commons Science and Technology Committee report into clinical trials and, indeed, the strategy and ongoing work undertaken by HRA itself.
In particular, HRA’s September announcement requiring registration of clinical trials in a publicly accessible database as a condition of ethical acceptance—taking up a longstanding recommendation of the Association of Medical Research Charities—recognises the overwhelming support for this agenda. The HRA has much to do in the coming months to develop its guidance into practical measures, but the Bill now gives clear and explicit direction to its work. The HRA has stressed that it expects the vast majority of researchers, sponsors and funders to embrace the plans to realise greater openness, responsible data sharing and publication of all results, and this is very welcome news.
It is so important for patients and the public to have confidence that the research they have been involved in will be used in the best way to improve understanding and health outcomes for the groups involved. Improved transparency is vital if more patients are to be encouraged to become involved in clinical research—one of the key ambitions of AMRC’s excellent vision for research in the NHS. The noble Lord, Lord Willis, referred to reservations. I was going to raise them and I am glad he did. I look forward to the Minister’s response. He may need to write to us in detail about those reservations and his response to that, or there might be a need for some small rewording of the draft provisions before Third Reading.
Finally, we recognise that the HRA is strongly committed to working with other bodies to overcome the barriers to transparency and create a culture of openness. Changing culture is, however, a tough call in the NHS. We also know from the AMRC research survey covering both doctors and nurses that we have a long way to go to get NHS staff to take part in research in the first place, let alone sign up to the transparency agenda. GPs are an important gateway for getting patients involved in research. However, although a majority of GPs surveyed believed it very important for the NHS to support research and treat for their patients, only 32% of those surveyed felt it was very important for them to be personally involved. Will the Government ensure that HRA and HEE work closely on this very important issue of buy-in to research and transparency by NHS staff? How will they ensure that the CCGs fully engage in this agenda?