When the National Institute for Clinical Excellence (NICE) was established in 1999, many patient organisations entered unknown territory. Clearly it would be important to influence the appraisal processes to ensure that the patient's perspective was taken fully into account – but how could this be achieved when the review mechanism was so new?
The Motor Neurone Disease (MND) Association suggested establishing an informal consortium to share experiences about submission processes. The aim was to help the process of submitting evidence to the Institute. This proposal was welcomed by patient groups and the Patients in NICE (PIN) group was formed.
The PIN group was chaired for the first year by George Levvy, chief executive of the MND Association.
Since its first meeting in December 1999, the group has brought together representatives from a number of charities including Arthritis Care, the Alzheimer's Society, CancerBACUP, the Multiple Sclerosis Society, the MS Research Trust and the National Asthma Campaign.
A dialogue was therefore established with the NICE team so that members of the group could hear what would be helpful in the evaluation process, and could raise problems that its members were experiencing.
By focusing entirely on the processes and procedures under deployment, rather than issues specific to any one submission, the group could steer well clear of issues that might otherwise have threatened the very strict confidentiality which all parties insist on during review periods.
The group has made a tremendous start, and as the newly elected chair I relish the opportunity of developing its work further.
The beauty of the PIN group for me is its simplicity: no membership fee and no internal dispute over policy positions – it is a resource that exists to aid both members of the PIN group and NICE itself.
We all have vested interests. Some new treatments for arthritis are currently under review, for example, and we would be failing the members of all our individual organisations if we did not do everything possible in their interests.
But the PIN group is not about competition – it is about sharing good practice and making it as easy as possible for us all to get good, strong, patient-centred evidence before NICE.
Much of the group's focus has been on the weight given to patient evidence, patient attendance at appraisal committee hearings and the need for more transparency in the appraisal process.
Members have always argued that the requirement to maintain confidentiality, particularly between NICE's provisional and final determinations, was unnecessary and unworkable. So there is now a warm welcome for the NICE board's recommendation that the process be opened up.
Direct dialogue with NICE has been important. A NICE representative has attended some part of every group meeting. PIN is officially recognised by NICE as a consultee, and at NICE's conference last year the group's workshop was one of the most heavily subscribed.
The group clearly works for its members and will evolve further as the range of technologies being reviewed widens. The positive response from NICE demonstrates the common-sense notion that consultation is best served by high quality communication.
PIN exists to ensure that the best possible information can feed in to decisions that affect millions of people. Its success is good news for everybody.