The NHS R&D Forum 2019: HRA highlights from the conference

“The Health Research Authority has supported the NHS R&D Forum annual conference for a number of years. Every year the number of delegates grows along with the breadth and quality of the programme. It’s a great opportunity for NHS staff from across the UK to get together, to share good practice and gain inspiration to improve their service to the research community.” 

The opening session focussed on why we all do what we do. The audience paid rapt attention to a heart-felt presentation from Jess Mills, daughter of the late Baroness Tessa Jowell. Speaking a year after her mother’s untimely death from a rare form of brain cancer, Jess made a persuasive call for research that develops personalised, wrap-around care. She recognised the value for many patients of participating in research, because it provides hope – whether for themselves or for others. “Hope can be the most transformative medicine of all.”

Dr Louise Wood, Deputy Director Science Research and Evidence at the Department of Health and Social Care, picked up the theme of the benefit of research. It was striking how research is much more evident across the health and care system, as she referenced reports from NHS England, the Care Quality Commission and the Royal College of Physicians.

Professor Sir Jonathan Montgomery, outgoing Chair of the HRA, closed the morning session by summarising the range of actions taken by the HRA over the past year as part of our mission to make it easier to do good, responsible research. It was evident that the audience were there to help give patients the opportunity to take part in research, and to work together to make sure that research produces evidence to improve health and care in the UK. 

HRA Policy Development Lead, Alastair Nicholson, was part of the panel that supported the session on “streamlining study set up", which focused on single commercial contract value review for England, required use of unmodified model commercial template agreements, and how NHS England is working to better manage Excess Treatment Costs. This piece of policy aims to simplify the set up for commercial contract research with a view to getting research set up as fast as possible.

Lindsey Hughes the Deputy Director of Research at NHS England and the lead for implementing Excess Treatment Costs across England, opened the session. She described a phased approach to the roll out of the new process for a single contract review across England.  Trudi Simmons from the Department of Health and Social Care spoke about improvements in the Excess Treatment Costs system and how this aimed to reduce set-up time for non-commercial research and eliminate the need to negotiate with commissioners at all sites.

Alastair also spoke to the group about the development of SoECAT (Schedule of Events Cost Attribution Tool) – a tool to support the clarification of cost attribution when applying for research funding. The development of the SoECAT will be a cross agency collaborative venture.

This session included a lively conversation with Professor Sir Jonathan Montgomery and Dame Caldicott on her early career and later achievements with data, safeguarding, confidentiality and government policy. We heard about her work as national Data Guardian and President of the Royal College of Psychiatrists. She also spoke about the independent review of information governance that she led from 2012 to 2013 and her time as Chair of the Caldicott Committee, which was set up to advise on patient identifiable data and eventually led to the creation of ‘Caldicott Guardians’ in all provider organisations in the NHS.

Dame Caldicott also touched on the personal experiences that inspired her to pursue a successful career and take on the leadership roles that had previously been less accessible to women. She shared insights into the barriers that she had faced in her early work life and the trust and respect she had had to gain from male colleagues to enable professional partnerships. This led to her becoming a champion of women’s rights and a trailblazer for working women. Dame Caldicott also spoke of some of the challenges of juggling a full-time career with being a parent and how “we need to know our limitations”.

The conversation was wrapped up by Dame Caldicott asking the audience a question around their data and how they think its shared. 

It was fabulous to see such a great turnout for the ‘hot topic’ of transparency in research, which demonstrated a high level of interest and engagement by research sponsors.

HRA Director of Policy, Juliet Tizzard, set out the work undertaken by the HRA to date, including the development of the research transparency strategy. She also spoke of some of the challenges and considerations this work highlighted.

The audience appeared wonderfully receptive to the ideas put forward and came up with some great suggestions, particularly in relation to ensuring compliance with the requirement to register clinical trials and in making clinical trial results available. Most notably, sponsors seemed to welcome clearer rules which they can refer to and seek to enforce when having conversations with investigators.