Intended for healthcare professionals

Rapid response to:


NICE at 20

BMJ 2019; 364 doi: (Published 26 March 2019) Cite this as: BMJ 2019;364:l1343


What we can learn from public involvement at NICE

Rapid Response:

Re: NICE at 20

In their BMJ editorial celebrating the 20 year anniversary of the establishment of the National Institute for Health and Care Excellence (NICE) Edwards, Appleby and Timmins raise concerns about some of the new developments that NICE have been required to introduce in response to the challenges of the NHS in 2019 (1). They specifically refer to the budget impact test and we agree that this needs careful scrutiny (2). However they conclude that “ NICE must be judged a success, and a big one. The social and ethical values it has adopted, its processes, the involvement of the public in establishing its underpinning principles, and the formidable network of researchers and advisers it has created are widely admired internationally”. In responding to the new challenges we feel that these attributes should not be lost.

In another BMJ editorial (3) Naci and Dixon assess the role of NICE in the new agreement on branded drugs for the NHS. The new scheme aims “to speed up access to cost effective branded drugs for patients. For the NHS, the objectives are to maintain the affordability and predictability of spending, and to deliver value for money………….on speeding up access, the scheme allows enhanced horizon scanning for new drugs and substantially faster assessment by NICE". While broadly optimistic they finish with their concerns, which include the need for “more robust safeguards to ensure the high standards of transparency and accountability achieved over the past 2 decades are maintained”

A recent consultation by NICE on the principles underpinning its process suggest that their concerns are not unfounded (4). The document, “The principles that guide the development of NICE guidance and standards” is not just a revision of principles but implies a wholly different approach to the application of the social and ethical values thought to be relevant to NICE’s work. It is pitched entirely on the procedural principles that govern how NICE works. While important, these are no substitute for the underlying substantive social and ethical values that NICE is committed to help secure. This change raises two questions. First, what is lost when substantive ethical and social values, like those endorsed in NICE’s two previous SVJs documents (2004, 2008), are no longer explicitly put forward as guiding principles for NICE? Second, what is the impetus for and objective of this dramatic change – could it be heralding a shift in the way NICE thinks or works? Considering the first question, the main casualties of this new approach are likely to be accountability, transparency, consistency, and public, political and professional understanding of the reasons for NICE’s decisions. With regards to the second question, the Institute is no longer the dominant provider of NHS guidance - NHS England is increasingly issuing clinical guidance either directly or in collaboration with NICE, for example, in the case of the Cancer Drugs Fund (5). Public health guidance is now frequently developed by Public Health England. Within this crowded space, there are hints that NICE’s methodology is changing to accommodate broader goals (2).

As a group of observers and admirers of NICE, we were disappointed that the proposed SVJ document appears to be distancing the institute from many of the values that made NICE such an innovative and widely-admired organisation. We came together to provide a joint response to the consultation and proposed alternative approaches (4).

The NHS is currently under immense pressure from financial, work force and Brexit challenges. Now is not the time for retreat from substantive values. As Richard Horton said in his recent Lancet editorial (6) “the values of medicine form the basis for a moral contract between the medical profession and society” ……….. the idea of a social contract between medicine and society remains relevant in today’s National Health Service, but that this contract is under threat from corrosive government policies, rising public expectations, and increasing demand for health care”. This is the time for NICE to reaffirm their values and seize again its global leadership role as an institution that brings accountability, transparency and legitimacy to decisions that are among the most ethically and politically challenging in any society.


1. Birthday Thoughts: NICE at 20. Edwards N, Appleby J, Timmins N. BMJ 2019; 364 doi: (Published 26 March 2019)

2. Cost effective but unaffordable: an emerging challenge for health systems. Charlton V, Littlejohns P, Kieslich K, Mitchell P, Rumbold B, Weale A, Wilson J, Rid, A. BMJ. 2017 Mar 22;356:j1402.

3.New agreement on branded drugs for the NHS Naci H, Dixon J, BMJ 2019; 364 doi:

4. National Institute for Health and Care Excellence, social values and healthcare priority setting. Littlejohns P, Chalkidou K, Culyer AJ, Weale A, Rid A, Kieslich K, Coultas C, Max C, Manthorpe J, Rumbold B, Charlton V, Roberts H , Faden R, Wilson J, Krubiner C, Mitchell P, Wester G, Whitty JA ,Knight S. JRSM published on line 3rd April 2019

5. Challenges for the new Cancer Drugs Fund Littlejohns P, Weale A, Kieslich K, Wilson J, Rumbold B, Max C, Rid A. Lancet Oncol. 2016 Mar 3. pii: S1470-2045(16)00100-5.

6. UK citizens are losing the right to health—who cares? Horton R. Lancet 2019 vol393 March 3rd.

Competing interests: No competing interests

03 April 2019
Peter Littlejohns
Professor of Public Health
Kalipso Chalkidou - Professor of Practice in Global Health at Imperial College London and Director of Global Health Policy and a Senior Fellow at the Centre of Global Development; Anthony J Culyer - Emeritus Professor of Economics, University of York; Albert Weale - Emeritus Professor of Political Theory and Public Policy, University College; London Annette Rid - Bioethicist, Department of Bioethics, The Clinical Centre, National Institutes of Health, USA; Katharina Kieslich - Postdoctoral Researcher, Department of Political Science, University of Vienna, Austria; Clare Coultas - Research Associate, Collaboration for Leadership in Applied Health Research and Care South London, King’s College London; Catherine Max - Independent consultant; Jill Manthorpe - professor of Social Work and Director of the NIHR Health & Social Care Workforce Research Unit, King's College London; Benedict Rumbold - Assistant Professor in Philosophy , Department of Philosophy, University of Nottingham; Victoria Charlton - Bioethicist, Department of Global Health & Social Medicine, King’s College London; Helen Roberts - Professor of Child Health Research, UCL Great Ormond Street Institute of Child Health ; Ruth Faden - Founder, Johns Hopkins Berman Institute of Bioethics, USA; James Wilson - Senior Lecturer in Philosophy University College London; Carleigh Krubiner - Policy Fellow, Centre for Global Development Faculty, Johns Hopkins, Berman Institute of Bioethics; Polly Mitchell - Research Associate, School of Education, Communication and Society, King’s College London ; Gry Wester - Lecturer in Bioethics and Global Health Ethics, Department of Global Health & Social Medicine, King’s College London; Jennifer A Whitty - Professor of Health Economics, University of East Anglia; Selena Knight - Academic Clinical Fellow in General Practice, King’s College London.
Faculty of Life Sciences and Medicine, King's College London
Guys Campus