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

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. Thank you for listening. Do you have any questions?
Public Involvement Programme
@NICEGetInvolved

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

16. 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

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

18. 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