Improving Healthcare Communications in Rare Disease - Blog Part 2

Written by Benjamin James on Tuesday 2nd July 2019



OPEN Health are delighted to be supporting Benjamin James with his master’s studies and his dissertation on 'Improving Healthcare Communications in Rare Disease’.  Please read part 2 of his blog experience here.

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It has been great to work with OPEN Health over the last couple of weeks; helping with a project about writing patient lay summaries and continuing work on my dissertation.

Since my last blog, I have continued working on my dissertation, conducting interviews at OPEN Health with Michael McLaughlin, Amanda Pulfer and Gavin Jones, with two more interviews with Richard Jones and Sandy Royden scheduled. This has helped to inform my dissertation on communications in rare disease and given me some great insights. I have also been conducting an analysis of articles, transcribed interviews and started to write my introduction to my dissertation, making some good progress. Only 10,000 words to write now, which is a bit daunting but I’ll get there in the end, I hope!

I have also had the opportunity to help with an exciting project to write patient lay summaries, offering my insight and perspective. This has been a fantastic opportunity to get hands on experience and a real flavour of working with clients, the medical communications team, project work and working to deadlines.

Last week I had a meeting with David from Rare Revolution magazine and Gavin, talking about speaking at a congress in Barcelona around communications in rare disease, where I will present some of the findings of my dissertation. I am really looking forward to this, although I have been aboard before in a plane, this will be the first time I have travelled on a plane in my powered chair. There’s a first time for everything I suppose.

I am looking forward to my last few weeks with OPEN Health, working with the organisation now and in the future. This is an exciting time for me as I have been offered a job with OPEN Health. This job is still being worked out, but I look forward to becoming part of the OPEN Health team.

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