An insight into the Medical Advisory Committee

The Cystic Fibrosis Trust Medical Advisory Committee (informally known as MAC!) meets twice yearly to advise the CF Trust on clinical and medical issues relating to cystic fibrosis, and guide our work in these areas. The Committee comprises expert clinicians – CF adult physicians and paediatricians, specialist CF nurses, physiotherapists, dietitians and pharmacists, and also patient and parent representatives. We highly value this input and are grateful to all of those who give their time on MAC and our other advisory committees to help ensure that our work is relevant and impactful.

The Committee met last week at our Bromley HQ, and a diverse range of topics were discussed and debated.

Director of Marketing Tamsyn Clark presented a preview of the CF Trust's new brand, and sought feedback on the general direction in which we're heading. The Committe's feedback was constructive; ensuring that the clinical community is on board and understands and appreciates our brand and messaging is crucial, as our relations with clinicians are vitally important to our work.

Our annual medical conference is well-attended by clinicians from CF Centres and Clinics across the UK. The next conference will take place in the spring of 2013 and MAC discussed how the event could be enhanced to become more useful for those attending. As Committee members highlighted, study leave is becoming more scarce in the NHS and there are also a number of other conferences competing for delegates, so it is important that we continually evaluate and improve the events that we hold for clinicians.

Our consensus documents provide valuable guidance to clinicians treating patients with CF in critical areas such as antibiotic treatment and general standards of care. MAC identified which documents are due to be updated and also agreed two new documents to be produced; next year work will begin on consensus documents for management of infants diagnosed with CF through screening, and CF-related liver disease.

The Clinical Care team reported that peer review pilot visits have gone ahead and feedback so far on the new peer review process has been very positive. The CF Trust will aim to facilitate around ten peer reviews a year and to have a six week turn around from the official date of review to the publishing date of the report. The CF service will be given six months notice of a peer review and most of the data will be inputted online via an extranet server similar to the NHS system. However, patient sensitive information will not be included in the server.

Dr Diana Bilton, Chair of MAC, reported that the UK CF Registry, which is funded by the CF Trust, currently contains complete clinical data for an impressive 89% of the UK CF population. New data from the Registry will be released before the end of the year.

There was also discussion around the current challenges facing the various specialist groups involved in the provision of CF care (such as physiotherapists and pharmacists). One of the key priorities of the Trust's clinical care programme is ensuring that specialist care is available for everyone with CF, and we work closely with clinical teams to achieve this.

This week our Research Advisory Committee (RAC), which advises the Trust on scientific and research issues in CF and also reviews our research grant applications, is meeting over two days. We'll provide an update soon after the meeting.
 
Read more about MAC and RAC.