Thursday 24 January 2013

The Cystic Fibrosis South West meeting - road testing our research strategy

Janet Allen, Director of Research at the Cystic Fibrosis Trust, braves the elements with members of the CF community to discuss our new research strategy.

I travelled to Bristol for the Cystic Fibrosis South West meeting on Tuesday, together with CF Trust CEO Ed Owen.

This was my first regional meeting and my first opportunity to explore some of our ideas for the Trust’s new research strategy with the CF community. Any strategy needs to be “road tested” before you roll it out, so we held our discussions in confidence.

I was very nervous – what would people think? Were we on the right track?

The weather was atrocious, with sleet and snow, and as it got worse Ed and I were worried that no one would be able to make it to the meeting, including ourselves! Audrey Williams, our South West Regional Fundraising Manager, who put all the hard work into arranging the event, had to turn back when she hit a blizzard en route. 

About 30 intrepid travellers turned up for the meeting, reflecting the commitment of the CF community. There were parents and family members of people with CF and scientists and physicians from Bristol University.

Ed spoke about the Trust and “where we are”, and then I talked about the process of building a strategy and what we wanted our strategy to look like. We then opened the session for feedback, questions and comments.

There was lots of constructive feedback and debate – we even ran over schedule. We had an open and frank discussion and there was a lot of support for the new research strategy approach and how we have gone about the process. Over the next couple of months we are holding more consultations, refining the strategy ready for publication at the end of April.

Thank you Audrey for arranging the meeting and fantastic venue, and above all, thank you to everyone who braved the weather to take part.


  1. Do you have any plans to publish a draft so everyone has the chance to see and provide feedback? Obviously people with CF cannot attend these consultations due to risk of cross-infection. Seems a shame to deny the people who actually have CF the opportunity to participate when it would be very easy to do now we have the Internet.

  2. Yes, I too would like to see some feedback if possible. I was one of the disappointed who had to turn back to Devon because of the poor driving conditions on our way to Bristol.

  3. Hi - thanks for your comments. We are hoping to test the strategy with people with CF who are prevented attending these meetings in person, possibly by using online conferencing facilities. Keep an eye out for details.

  4. Mobile Dialer

    Its good to see that you are being paid for your hard work, though it took some time and patience but in the end it was worth the efforts. And I must say that this company too is good enough to get back to you and pay you even after your public disclosure of the issue. I don’t think there are many people who take things in the right spirit like they did.