Myeloma UK has called for patients, family members and carers to be more involved in developing guidance published by the National Institute for Health and Care Excellence (NICE).
NICE, the drug approval body for England and Wales, had asked for views on proposals to improve how patients and the public can contribute to developing guidance on new treatments and care standards. A response submitted by Myeloma UK acknowledged the work NICE does to involve patients and the public but highlighted important areas where there is more to be done.
Myeloma UK Policy and Public Affairs Officer Shelagh McKinlay said, “Patients, carers and patient organisations can already contribute to the work of NICE in a number of ways, including submitting information to the drug approval process.
“However, there is still a lot more to be done to ensure that the issues that matter to patients and carers are better understood and incorporated into the NICE decision-making process. Our recommendations aim to ensure that patients, carers and family members are involved earlier in NICE guidance development and better understand where their contribution has made a difference.”
Key comments and recommendations from Myeloma UK include:
- NICE should do more to encourage pharmaceutical companies to improve the patient preference and experience information they submit. This should include better involvement of patients in the design of clinical trials and identify key quality of life information for drug appraisals
- More priority should be given to developing ways of capturing patient experience to be used in deciding whether to approve new treatments for use on the NHS
- NICE need to better define the impact and influence that the contribution from patients and carers has on decisions and give clearer feedback on how patient input has been taken into account
- We strongly support increasing training for NICE staff and committee members on their responsibility to involve patient and the public in their work
Myeloma UK is currently working with NICE on a research project to improve the way patient perspectives are understood and taken into account in decisions about the availability of new treatments. The study will explore best practice in capturing information about patient preferences relating to their condition and treatments. This project will enable Myeloma UK to help define the best way of capturing what matters to patients and how to feed this into the drug approval process.
If you would like further information on how NICE involves patients and the public in its work or the Myeloma UK Health Services Research Programme, contact the Policy Team on firstname.lastname@example.org.