1. SMC and the role of Public Involvement Action Duchenne Scottish Mini Conference 4 December 2015 Lindsay Lockhart Public Involvement Officer

2. Our Family

3. The role of SMC To accept for use those newly licensed medicines which clearly represent good value for money to NHS Scotland Analyses information supplied by the medicine manufacturer on the health benefits of the medicine and justification of its price Works to ensure that those medicines which represent good value for money are accepted for use as quickly as possible so that patients can benefit The Consortium is made up of lead clinicians, pharmacists and health economists, together with representatives of health boards, the pharmaceutical industry and the public

4. How medicines are assessed by SMC NDC – New Drugs Committee – assesses the clinical and cost effectiveness submission provided by the manufacturer of the medicine NDC ‘accepted’ – medicine goes to SMC for assessment with inclusion of patient group submissions NDC ‘not recommended’ - draft advice given to pharmaceutical company with two week deadline for response Pharmaceutical company can request a PACE meeting (Patient and Clinician Engagement) for end of life, orphan or ultra orphan medicine PACE meeting takes place attended by submitting patient groups PACE Template presented to SMC as part of assessment of the medicine

5. Timelines NDC meeting – 26 January Patient Group Submission deadline – 1 February SMC meeting – 1 March Advice published on SMC website – 11 April If ‘not recommended’ at NDC and company request PACE: PACE meeting – 8 March SMC meeting – 6 April Advice published on SMC website – 9 May

6. Public Involvement How do patient and carer experiences add to the review process? What is it like to live with a condition? How well are patients managing with currently available medicines? What is the real quality of life impact of a new medicine? How would a medicine improve experience of care? What is the impact to carers and family members? Helps SMC members fully understand the impact of a new medicine to patients and carers

7. Patient/Carer Groups gathering evidence from the people they represent and capture it in in a Patient Group Submission Form SMC Meeting Papers Each full submission form is included in the SMC meeting papers, which members receive two weeks before the meeting Presentation Public partner delivers presentation during the consideration of each medicine HIS Public Partner Collates submissions and writes presentation highlighting key points

8. Strengthening SMC Public Involvement SMC Public Involvement Team in place SMC Committee Meetings in public Patient and Clinician Engagement (PACE) Public Involvement Review Report and implementation of recommendations

9. Recommendations Each submitting patient group is offered support Capturing Patient Group information A new Guide for Patient Group Partners and a new Patient Group Submission Form Patient and Public Involvement Group

10. Patient Group Partner Registration Form

11. New Guide & Submission Form

12. PIN Advisory Group 3 Public Partners, ADTC Collaborative Member, SMC Committee Member Role Forum to enable patient/carer groups and Public Partners to engage constructively and productively with SMC Provide advice to SMC to strengthen key relationships Work with ADTC Collaborative on relevant public involvement issues Membership

13. PIN Advisory Group - Developments Advanced release of embargoed decisions to submitting patient groups – October 2015 Replacement for SIP Form – first meeting of SLWG – October2015 Presentations for PACE medicines – new format – October 2015 PACE mentors – work in progress