Health and Social Care Bill

Memorandum submitted by the Association of Medical Research Charities (AMRC) (HSR 53)

1. The Health & Social Care Bill proposes extensive changes to the structure of the health system in the UK. This will have a significant impact on health research in the UK and our ability to improve patient care for the future. The Government outlined in their White Paper Equity and Excellence: Liberating the NHS their commitment to the promotion and conduct of research as a core role of the NHS. A recent Ipsos MORI poll demonstrated overwhelming public support for the NHS to support research into new treatments with 94% believing their local NHS should be encouraged or required to support research [1] . A coalition of charities and organisations sharing an interest in health research – including the Association of Medical Research Charities, the Wellcome Trust, Cancer Research UK, British Heart Foundation and the Academy of Medical Sciences - have come together to ensure that the proposals in the Health & Social Care Bill deliver this commitment.

2. We welcome the increased focus on research and innovation in the Government’s plans for the NHS following the listening exercise and the work of the NHS Future Forum. In particular we value the commitments to:

· include a new duty for the Secretary of State to promote research;

· create a new duty for clinical commissioning groups to promote research and innovation and the use of research evidence, in line with the current duty on the NHS Commissioning Board;

· ensure that a culture of research and innovation is embedded in the arrangements for both the Board and Public Health England;

· make sure that clinical commissioning groups and the NHS Commissioning Board ensure that treatment costs for patients who are taking part in research funded by Government and Research Charity partner organisations are funded through normal arrangements for commissioning patient care, as set out in existing guidance.

· establish Public Health England as an executive agency of the Department of Health, ensuring that expert and scientific advice is independent, while at the same time integrating policy and action to allow a more joined-up approach to health protection and emergency planning.

· include a new duty for the Secretary of State to maintain a system for professional education and training.

We believe that these changes will contribute to an environment in the NHS and public health system that facilitates and builds research for the benefit of all patients – now and in the future. We hope that the amendments to the bill will deliver these ambitions. We recognise that leadership and commitment will be required in the NHS to ensure that the vision set down here will be delivered as the new system is developed.

Going forward, we are particularly concerned to ensure the government’s plans:

3. Mitigate the impact of localisation on research

The move to clinical commissioning groups and the greater responsibility for health improvements placed on local authorities means that there are likely to be many more commissioners and bodies involved in research projects. We welcome the move to place clinical commissioning groups under a duty to promote research and the use of evidence provided by research, and also the clarity that commissioners should fund the treatment costs of patients who are taking part in research.

We are also concerned that no comparable research duty exists for local authorities in relation to their new public health functions. Furthermore support must be provided at the level of clinical commissioning groups and local authorities to establish, co-ordinate and develop local expertise and meaningful engagement with research.

4. Enable the safe and secure use of patient data for research

The wealth of information retained by the NHS in patients’ records provides an unrivalled resource for medical research. A clear framework for protecting both patients and researchers and enabling the safe use of this information is vital. We welcome the recognition in the government response to the Future Forum of the concerns around protecting the confidentiality of patient information while enabling collection and access to information to improve our understanding of disease and outcomes. The government undertook to

"amend the Bill to protect patient confidentiality in a way that supports our plans to drive quality improvement through greater access to information; and to promote high quality research."

We support this ambition but are concerned to ensure that any amendments achieve this desired outcome for the use of both anonymous and identifiable patient information.

5. Establish streamlined and robust regulation and governance

Separate to the bill are plans to establish a Health Research Regulatory Authority (HRRA) – a single regulator of health research in the UK – initially as a special health authority with the National Research Ethics Service as its core. The authority will be established as a non-departmental public body in primary legislation through a further Health & Social Care Bill planned for the next parliamentary session.

There is ongoing discussion over the different legislative options for establishing this organisation. It would be possible to amend the current Health & Social Care Bill to establish this body.

The priority for health research must be to accelerate steps to streamline the system. As changes are made to the system it will be important to retain the confidence of researchers, patients and the public in the quality and robustness of the regulation and governance of health research.

6. Integrate meaningful patient and public involvement in research

The concept of ‘no decision about me without me’ and a focus on the best interests of patients also apply to research which involves patients.

The moves made by the government to strengthen accountability and public involvement, including a director-level role with responsibility for patient and public engagement on the NHS Commissioning Board, are welcome. However, we are anxious to ensure that the philosophy of patient and public engagement is integrated at "all levels of the health and wellbeing system" and includes research as a core component of that system. There is currently an emphasis on patient and public involvement in care and provision of services which implicitly includes involvement in the design and conduct of research; we would value this involvement being more explicit.

7. Develop the health research workforce

With the promotion and conduct of research at the heart of the NHS, we need a workforce and leadership trained to demand, understand and utilise research and innovation for patient benefit. Academic values and a spirit of enquiry should be pervasive throughout the service. It is vital that investment is made in training and developing the people with the necessary skills and expertise to support this.

We support the government’s commitment, in its response to the Future Forum, to place a new duty for the Secretary of State to maintain a system of professional education and training, and to establish a transparent system around the use of the education and training budget. We welcome the government’s ambition to improve arrangements for professional development and support the development of a co-ordinated, accountable system with effective national oversight and appropriate involvement from higher education institutions.

We look forward to further detail in the autumn and would welcome the opportunity to comment on the proposals as they progress. We are anxious that as this system is developed, it must create an organisation that enables individuals from across the NHS – not just consultants and academics but also nurses, midwives and therapists – to engage in both research and clinical practice.

8. Innovation in the NHS

There is the opportunity to improve the uptake and diffusion of new ideas, therapies and products in the NHS. We welcome the planned review of innovation and members of this coalition will be responding to this separately.

Association of Medical Research Charities

Academy of Medical Sciences

Alzheimer’s Society

Alzheimer’s Research UK

Breast Cancer Campaign

British Heart Foundation

Cancer Research UK

Genetic Alliance UK

MND Association

Parkinson’s UK

The Prostate Cancer Charity

Royal College of Surgeons of England

Wellcome Trust

July 2011

[1] Ipsos MORI poll, May 2011 – details here: [accessed 1 July 2011]

Prepared 19th July 2011