EPSRC Proteus IRC launched two interdisciplinary community-based research projects in the summer of 2018. The research questions have been proposed by two local patient support groups: Breathtakers and The Cheyne Gang.
We invited students from across the University of Edinburgh to take part in these exciting research projects.
Breathtakers – The support group for the lung condition “bronchiectasis” were interested in exploring how communication (in all of its many forms) can empower the diagnostic process or disempower it. They wanted to work with students who are interested in understanding how communication can improve self-diagnosis. They were also keen to investigate the space between medical language and the patients’ interpretation of it, and how that can impact lung health.
The Cheyne Gang– A community-based choir who live with the lung condition “chronic obstructive pulmonary disease” (COPD) wanted to conduct evidence-based research around a new breathing technique that the choir uses. The choir were interested in exploring if the breathing technique actually impacts lung physiology and improves the symptoms of COPD overall.
Both projects will be partnered by the Edinburgh International Book Festival. The Book Festival will host the project teams at a special reception during the evening of 22 August 2018. The teams will discuss their research and learning journeys and explain their findings to an invited audience of patient support groups, students, authors clinicians and the wider public.
Members of the public will also have access to the research findings as part of Proteus’s Creativity for Breathing drop-in sessions at The Bookshop on George Street on 21 August and 22 August 2018.
Excellent Learning Experiences
Community-based research provides opportunities for the wider public to generate research ideas, questions and agendas. When students perform research in response to these question, they co-create research to find solutions to real world problems. This approach aims to strengthen the research process and its outcomes for all partners involved.
Students learn to use their critical thinking skills to analyse complex societal issues. Working within interdisciplinary teams (groups of students from across the 3 colleges and from various disciplines) allows students to apply their own academic rigour to the research question while acquiring an interactive expertise of other disciplines.
Working with community partners, students learn sophisticated skills of perspective taking, negotiation and participatory action research.
The Edinburgh Award
The Edinburgh Award is a University of Edinburgh programme that students can undertake alongside a particular activity. The Award aims to recognise student involvement in these activities and enhance the learning experience. We would use the Edinburgh Award to recognise student’s learning as part of our Summer projects.
Students who complete the Edinburgh Award will be invited to an Award reception in Semester One.
How to Apply
THIS OPPORTUNITY HAS NOW PASSED.
If you would like to find out more, please contact Helen at Helen.Szoor-McElhinney@ed.ac.uk
Breathtakers Student Group Blog: Week 1The Breathtakers student group met on Tuesday, 17th July 2018.We explored the NHS website dedicated to bronchiectasis, to get a deeper and more informative idea of what, technically, the disease is, through which symptoms it manifests itself, how and to what extent it affects the patient’s life.We also gathered reflections and suggestions coming from this collective reading, and agreed on the realisation of a “journey journal”, co-edited by the patient and the doctor throughout the whole process of diagnosis.
We are still thinking about the possible format of this “journey journal”. Would patients perceive it as a burden, or a homework, or rather as a useful tool for brief but deep self-tracking, and for improving communication throughout the diagnosis process? We will discuss these, and further issues, at our next weekly meeting.
Breathtakers Student Group Blog: Week 2
We had our second weekly meeting to discuss the structure of our future work. The group has decided to introduce a journal to empower patients. The journal is designed to help patients to articulate their health states more effectively to clinicians.
We hope that the journal can record the physical and emotional stages of the patients health throughout the journey of the diagnosis process and act as a reference file for clinicians.
We are enjoying working together and researching this project with our community partners. The work is challenging but we hope that we can create beneficial new knowledge to everyone involved.
Cheyne Gang Student Group Blog: Week 1
On Monday 16th July 2018, we went to St. John’s Church at Oxgangs to join the Cheyne Gang Choir for a couple of hours of singing. We got to see them practice breathing and singing techniques, including progressively lengthening breath sequences.
It was also really interesting to see how breath ‘points’ were noted on the music sheets themselves! Encouragement such as “You don’t have to take deep breaths before you start! You have all the air you need inside of you,” seemed to really help the singers. In fact, one of the students also found an improvement in their breathing following the session!
Cheyne Gang Student Group Blog: Week 2
After a wonderful first meeting with the Cheyne gang singers, we met to discuss how we would proceed with our project.
We decided to try a mixture of tests to get both physiological and psychological data. We would use a paragraph test, a short 3 minute walking test, and a questionnaire modified from the AQ20. Anne has kindly agreed to bring together a group of volunteers, and we look forward to meeting them all next week.
Hopefully, over the next few weeks, we will be able to make tangible progress on understanding the scope of challenges the gang faces, and offer them usable results.