Checking we’re on the right course

Wednesday saw our first full Advisory Group meeting, where everyone involved could sit down, check on progress and discuss the next stages of the project. Logistically getting everyone together is never easy though we have found that at least initially it’s good to meet face to face so we can get to know each other. After that it’s easier to make the most of technology and have people join meetings with video conferencing.  As the project runs over 12 months there are only three such meetings planned and budgeted for, so it’s really important that we make the most of the time.

Plans for raising awareness of the project via this blog were agreed, with everyone getting involved in cascading links via their networks. These include key professional bodies, charities and organisations that provide support to people with neuromuscular diseases and central nervous system disorders.

Refinements were made to the details of the studies that will be included in the systematic review.  For example we had originally intended to only include studies with 20 participants or more. But as our clinical experts advised that few if any will include this many participants, we have removed the limit. This means we will capture as much of the evidence as possible in this under researched area.

We discussed the focus groups that will inform the survey of health professionals. Joanne our health economist presented the draft topic guide to the group. Through discussion she was able to add in some additional questions, for example, it will be important to find out whether patients are issued with a spare device or different devices at the same time.

We also discussed the best way of identifying patients to take part in interviews and the issues in recruiting from clinics and non-NHS settings. The routes we use will have implications for gaining both research ethics and research governance approvals, which can be lengthy processes. In order to make sure we include as many patients with a range of conditions we will be looking at using a variety of recruitment approaches so are exploring all the options further.

The structured discussion and resulting advice from group members was invaluable. The ‘Advisory Group’ lived up to its name and function: from offers of practical assistance in recruiting, to highlighting issues that might have been missed, to monitoring project progress.

Everyone agreed that it had been an interesting and positive meeting and certainly the advice from the health professionals was really helpful in informing the next stages. Now all we need to do is follow up on the agreed action points!

Blogger: Alison Booth