A safe space for engagement? Stories from the NICE front line Andrew Dillon Chief Executive National Institute for Health and Clinical Excellence

NICE quiz!

Theme Some context about NICE, its role in the NHS and the approach we take to developing guidance Motivation and behaviours of the groups who act as stakeholders in our work Interaction between stakeholders and the influence of the media Nature of the space we create to enable stakeholders to engage with our advisory bodies Achievements and limitations of the approach

Contribution to health and social care Evidence services Guidance Standards

Independent advisory system

NICE process and methods Comprehensive evidence base Expert input Independent advisory committees Consistent processes and methods Genuine consultation and contestability Regular review

Interpreting evidence

Who’s engaged? NICE Users Professionals System PoliticiansPublicMediaAcademia

Stakeholder ambition Stakeholder groupMotivationAmbition UsersImprovements in quality, length of life; a sense of entitlement Access to treatment, services ManufacturersShareholder value, return on investment Buy decision ProfessionalsDuty of care, professional curiosity, esteem Enabling recommendation SystemEquity of resource allocation, good outcomes, cost control Return on investment, financial control PoliticiansResult for constituents, consistent decision-making Defensible outcome MediaStory, editorial line, insightStory, editorial line, enlightenment, influence AcademiaMethods development, influence Research, opportunity to influence practice

More than one space for engagement Media, public politicians Research and development Users, professionals, system

Stakeholder interaction System Staff Users Academia Industry Media Politicians Judiciary

Stakeholder interaction System Staff Users Academia Industry Media Politicians Judiciary

Dronedarone appraisal

Stakeholder interaction System Staff Users Academia Industry Media Politicians Judiciary

Stakeholder interaction System Staff Users Academia Industry Media Politicians Judiciary

Making the space work People can say what they want, but reasoned arguments carries the greatest weight Meetings structured to enable participation by members and people invited to give evidence Apply methods for interpreting evidence which helps ensure but don’t force a conclusion Encourage those involved to keep the debate inside the meeting Enable those involved to be conscious of but not to feel they should necessarily take account of media and political debate Continuously develop the approach

Support for those engaging Structure for involvement (evidence submissions, committee meetings, consultation, appeals) Resources to help engagement (briefings, guides, public involvement team) Standard approaches for assessing and interpreting evidence Policy for managing conflicts of interest Opening the process to public scrutiny

Safe space: positives Genuine attempt to engage Broad definition of involvement Underpinned by structure and methods, applied consistently Transparent, with some limitations Provides real opportunities to shape the scope and influence the evidence base Offers the chance to challenge and require review Protects but doesn’t insulate the decision process from external debate and comment

Safe space: limitations It’s clearly not, of itself, enough to contain the debate It isn’t always an easy place to operate in, particularly for users Stakeholders not infrequently argue their voice hasn’t (or hasn’t adequately) been heard It’s hard for the media and the public to follow sometimes technical and occasionally esoteric discussions It’s survived judicial challenge, but it hasn’t avoided it

Concluding thoughts These decisions are some of the hardest in British public life They touch on the some of the most sensitive and personal ways in which Government can affect our lives Bringing science, politics and service delivery together is messy, difficult to explain and frequently leaves someone unhappy But it is, as Frank Dobson said when he launched NICE in 1999, “worth a bloody good try”