Managing uncertainty within NICE technological appraisals: the nature and impact of the 'social features' of decision-making

Lead Research Organisation: University of Kent
Department Name: Sch of Social Pol Sociology & Social Res


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Description The study set out to explore and describe the various aspects of uncertainty faced by the NICE appraisal committee, the social mechanisms applied for coping with these and the influence of these processes on the outcomes of decisions.

1 The salience and nature of uncertainty: Uncertainties were central to these rationing decisions and the difficulties of dealing with the various levels of uncertainty were manifest in both informants' accounts and our observations. Types of uncertainty identified in the data analysis were epistemic, procedural and interpersonal although sometimes there was overlap or blurring of the boundaries between these categories and one type evolved into another during the course of the decision-making. There was also uncertainty and ambiguity associated with the level of technicality and complexity of the information provided. There was recognition that some forms of uncertainty were ignored and not addressed, as they could not be managed and that, in order to reach a decision, deliberations ultimately needed to focus further down on a relatively small number of issues, with wider potentially problematic uncertainties 'bracketed off'. This study shows the importance of uncertainties associated with interpersonal relations and particularly the relations between the committee and the drug manufacturers, clinical experts and patient experts where there were uncertainties expressed about the motives behind the statements and accounts presented by these various interest groups.

2 Managing uncertainty: The need to exercise discretion and pragmatism within a formalised institutional framework led the appraisal committee to adopt a combination of formal and informal, collective and individual strategies in making decisions and managing uncertainty. Informal strategies, included developing rules of thumb, using' gut reactions' and also relying on and trusting in the chair of the committee and those with specialist expertise. Thus, a neat and apparently rational decision-making process masked a pragmatic method of what might be called 'elegantly muddling through'. Interest groups such as drug manufacturers also adopted tactics for managing the uncertainties in the decision-making process.

3 Methodological achievements: This ethnographic study was distinct from previous research in the area as it used an innovative approach that was based on primary data collected through observation of both the open and closed sessions of these committees whose decisions were prospectively followed over time complemented by analysis of documents some of which were not publicly available.

4Trust and influence within decision-making: Trust was explored as one important mechanism in regulatory decision-making, by which the appraisal of people became a proxy for appraising technologies themselves. Although (dis)trust in manufacturers was one important influence, a more intricate web of (dis)trust relations was explored also involving various expert advisors, committee members and committee Chairs. Within these complex chains of relations there were examples of more blind-acquiescent trust, more critical-investigative trust and, at times, hostile distrust which existed alongside one another. Difficulties in overcoming uncertainty through other means forced trust in some contexts, though not in others. (Dis)trust was constructed through inferences involving abstract systems alongside actors' oral and written presentations-of-self. Systemic aspects and 'forced options' to trust indicate potential insidious processes of regulatory capture.
Exploitation Route The academic social sciences have been targeted through publications and presentations at relevant conference which include specialisms in the sociology of health and illness, medical law, sociology of science, social policy and health services research. Thus, at least four papers are planned for publication in peer-reviewed journals targeted at these audiences (Social Science and Medicine, Social Studies of Science, Health Expectations, and Social Policy and Administration) focusing on different aspects of the study. Three of these are currently in draft form. The findings have already been presented to social scientists at five international and national meetings and there are plans to disseminate further to national audiences and international audiences in Australia and New Zealand. To tie in with more general academic work into uncertainty links have been set up with the RCUK's Global Uncertainties programme (contact Dr. T Riley-Smith, University of Cambridge).
The professional health and service community will be targeted through NICE and a meeting with Prof Longson and NICE management is scheduled for mid-January 2015 to discuss dissemination to relevant interest groups. The findings were presented at the Centre for Primary Care Seminar Series, University of Manchester in 2015. at the International Health Policy conference at LSE, London and at the NECA Conference In Seoul, South Korea both in 2017.
Sectors Healthcare,Government, Democracy and Justice,Pharmaceuticals and Medical Biotechnology

Description One of the key audiences targeted in the dissemination strategy was the NICE senior management, its technological appraisal committee members and the other key players involved in influencing decision-making. The overall aim was to enhance the effectiveness and robustness of NICE decision-making. To this end a policy briefing paper was disseminated to the NICE management team in January/March 2015 identifying points for consideration which emerged from the research evidence which included the identification of eight problematic areas and six possible solutions to address these problems. This report was well received by NICE as reflected in this quote from a letter ( 14/08/15) from Prof Carole Longson, the Director of the Centre for Health Technology Evaluation at NICE 'The application of your methodology for undertaking the research was exemplary.. We were impressed at the thoroughness of your work and the care and attention you have paid to presenting the findings back to us and disseminating them more widely. Your findings were useful and easy to understand. The timing of your research is also very helpful as we are about to embark on a strategic review of the technology appraisal programme. I am sure your research will have a positive impact on our review as we consider the changes and improvements we may need to make to our procedures and processes'. The aim is to further disseminate the research evidence through presentations at the NICE annual conference (November, 2015) and the awayday for the NICE technological appraisal committee members(December,2015). A presentation will be given (Sept 2015) at a workshop organised by the European Medicines Agency aimed at the development of techniques used by the regulatory agency for dealing with risk, uncertainty and complexity. The aim is to publish the policy briefing paper in a journal which is accessible to health service managers, clinicians and other key players involved with these rationing decisions.
First Year Of Impact 2015
Sector Healthcare,Pharmaceuticals and Medical Biotechnology
Impact Types Policy & public services