Improving patient involvement in NICE’s TA and HST methods and process review.

NICE has many methods and processes Our methods and processes outline the way to assess heath technologies They keep decision making fair and consistent They are not prescriptive, and give flexibility to decision makers

We have made progress and still tweaking them For technology appraisals, the new ‘technical engagement’ gives patients and carer organisations early insight and opportunity to comment Due to pilot further involvement of patients/carers earlier in the process This is evolution, not revolution

Improving patient and public involvement in TAs, HSTs, Diagnostics and Medtech Aims of the project To identify improvements needed in the current approach using anecdotal evidence, direct and indirect feedback To work with stakeholders and internal colleagues to identify proposals for improvements To subject those proposals to targeted consultation To include the finalised proposals as part of the broader methods and process consultation

Involving patient groups Work has already begun for ‘improving meaningful patient and public involvement in CHTE programmes’ Working group Working group set up Members of patient groups and patient experts NICE staff Workshop Patient workshop held on 24 January 22 patient organizations and patient experts participated

Patient involvement Aim: to co-design realistic proposal options for changes to NICE’s public involvement in NICE’s medicines and non-medicines guidance (technology appraisals, highly specialised technologies, diagnostics, medical technologies and interventional procedures guidance) Proposal options will be fed in to the wider methods and process development for consideration and development Viable options will form part of the public consultation on the new methods and processes

Parameters and limits Policy Needs to fit with NICE’s policies and principles. Resources rapid and increasing throughput of topics no more money Time Part of the methods and process review Can’t add to the development time of individual guidance

Stages of patient group involvement in NICE’s methods and process review Workshop report sent to participants 22 March Final report and proposals sent to methods and working group Working group 11 January Purpose of project Review feedback Shape stakeholder agenda and invitee list Stakeholder workshop report 24 January 22 patient groups Review feedback, Cancer 52 and Genetic alliance reports and charters, and international examples. Identify priorities and solutions 5 March Finalise stakeholder workshop report Identify umbrella groups to communicate with 26 June Finalise early engagement, communications and questions Working group workshop 29 April Work through themes and priorities from the workshop report for early engagement in the summer Shape early engagement and communication Early engagement with patient stakeholders Summer 2019 Online engagement for all patient groups who participate with NICE Send to umbrella groups 5 September Go through results of the early engagement Shape priorities and proposals for methods and process groups Public consultation Summer 2020

Shared examples of other ways of public involvement Patient stakeholder workshop – January 2019 Reviewed feedback on public involvement activities in NICE medicines and technologies guidance (technology appraisals, highly specialised technologies, diagnostics, medical technologies and interventional procedures guidance) Shared examples of other ways of public involvement Aim: to identify realistic proposal options for changes to NICE’s public involvement that optimises all inputs

Key issues identified Information collection and synthesis How patient evidence fits into modelling and health economics Understanding committee decision making and patient impact Understanding outcome and having feedback on patient impact Templates, tools and resources Training and support for patient organisations Training and support on submissions Training and support for patient experts Committee culture Committee chairing

Online early engagement – summer 2019 Engage with as many participating patient organisations as possible Subject key themes and proposals already identified with patient groups to targeted consultation Gather any further issues and proposed solutions

Relationship between the working groups Steer the process and methods review, policy alignment Includes: NICE, NHSE, DHSC, Independent adviser Steering Group Manual Working Group Process Working Group Methods Working Group Task & Finish Group Patient involvement working group Makes recommendations to steering group, help knit process and methods guide together, give advice to task & finish groups Includes: NICE, patients, industry, academic reps Proposals for NICE’s public involvement Includes: NICE, patient and public reps Specific and focused groups Consider issues Draft recommendations for changes manual Includes: NICE, patients, industry, academics reps

When will this happen? When Activity Early 2019 Informal engagement with industry, patient/carer organisations and other stakeholders Summer 2019 Online early engagement with patient groups Now – summer 2020 Working group(s) and review started Workshop and webinars Summer 2020 Public consultation on proposed changes December 2020 – March 2021 Implement updates of methods and processes

Thank you for listening. Do you have any questions? heidi.livingstone@nice.org.uk Public Involvement Programme www.nice.org.uk/about/nice-communities/public-involvement @NICEGetInvolved

Optional slides on the patient involvement working group membership and stakeholder workshop participants

Working group – how were invitees selected PIN Rare disease Cancer Non-cancer Lay member Patient organisation Patient expert Experience of wider UK participation Associate Directors of relevant guidance types Sub set of stakeholder group

Patient involvement working group 6 patient members NICE staff (public involvement Associate Directors of relevant guidance types) Patient involvement working group

Stakeholder workshop – how were invitees selected? Draft invitee list Spread of experience of participating in Diagnostics, Medtech, Technology Appraisals, Highly Specialised Technologies and Interventional Procedures People and organisations who have participated in one or more of the types of guidance before (not new to role or NICE) Mixture of longer experience and less experience Including members of Patients Involved in NICE (PIN) without making membership of PIN a requirement. Spread across disease areas, including rare diseases, trying to avoid disproportionate representation in any area. A mixture of patient organization representatives and those experienced patient experts Draft list checked by the working group and augmented Stakeholders invited