Involving Patients (and carers) in research at NWLC & NAC

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Danielle Yuill tells us about her project to discover how best to involve patients and carers in research at the North West Lung Centre & National Aspergillosis Centre - amd not just reviewing grant …

Danielle Yuill tells us about her project to discover how best to involve patients and carers in research at the North West Lung Centre & National Aspergillosis Centre - amd not just reviewing grant requests and providing tissue samples.
Graham Atherton takes us through some of the many features & structures we can see in a lung x-ray - what does aspergillosis look like??.

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  • Hello, I’m Danielle Yuill, I’m a clinical project manager within the cough research team, based here at Wythenshawe Hospital. I’m going to talk to you today about patient and public involvement in research.
  • Firstly I’d just like to tell you at little bit about my role within the cough research team. As a project manager the bulk of my role surrounds setting up clinical research, whether these be studies involving drugs or simple questionnaire studies. This route map shows all the different things that have to be done before a research study can start – so as you can see, it is a long process from starting with a question to actually starting a study.
  • So that’s my role, but my professional interests, or hobbies as my husband calls them, surround two main areas. These are readability and patient and public involvement in research, which I’ll explain over the next few slides.
  • Readability is about how easily words can be read and understood and there are several things which can make information easier to read….
    So it’s my job to try and ensure that any paperwork that reaches the hands of patients taking part in research has been written and formatted taking all these features into account.
  • It’s my job to ensure that sentences like this don’t make it into patient information sheets! I’ve been working on research documentation for around 7 years now and even I’m not sure what this researcher was trying to say!
  • But how do I know that what I’m writing is easy for participants in research to understand? Well, I don’t. But you do, and that’s where patient and public involvement in research comes in.
  • Patient and public involvement in research is about getting involved with researchers in this research circle, rather than taking part in a study as a research participant. So, patient and public involvement is an opportunity to have your say in research, to have your voice heard, and to make a difference in research by….
  • In order to find out which areas of that research circle people with different conditions may or may wish to get involved in I am currently conducting a study called VOICE and I’m inviting you to take part.
  • So what is the voice study?
  • I’d like to invite you to join me on Saturday 26th October from 12.30pm till 2pm to talk about VOICE and offer your thoughts an opinions on which areas, if any, you think patients with aspergillosis may like to get involved in research.

Transcript

  • 1. Support Meeting for Aspergillosis Patients & Carers LED BY GRAHAM ATHERTON SUPPORTED BY NAC CENTRE MANAGER CHRIS HARRIS DANIELLE YUILL CLINICAL PROJECT MANAGER VOICE: PATIENT AND PUBLIC INVOLVEMENT NATIONAL ASPERGILLOSIS CENTRE UHSM MANCHESTER Fungal Research Trust
  • 2. Programme  1.30 Danielle Yuill– VOICE  2.00 Graham Atherton – Your subject (Chest X-ray)  2.30 Patients Discussion (Break)  3.00 Group discussion/Requests for information    Poetry & Aspergillosis Allergy needs combined allergens in some cases ABPA & exposure to compost  3.20 Q & A from the floor or online
  • 3. Patient and public involvement in respiratory research Danielle Yuill Clinical Project Manager, Cough Research Team
  • 4. Knowing me…
  • 5. H o b b i e s ! interests My professional
  • 6. So what is readability?
  • 7. Ladles and jellyspoons… This study will not change the usual conditions governing the treatment of patients, except to opt for the product evaluated by random sampling and recommend monitoring its efficacy.
  • 8. Aiming for a ‘gold standard’
  • 9. We need you
  • 10. What is patient and public involvement? “It means an active partnership between the public and researchers in the research process, rather than using people as the ‘subjects’ of research.” “No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights.” “Involving patients and members of the public in research can lead to better research, clearer outcomes, and faster uptake of new evidence.”
  • 11. Getting involved in research Identifying and prioritising Tell us how you found the experience and how we can improve it Commissioning Evaluating impact Help us to implement our research findings Implementing Help us spread the word about the results of studies Influence how we prioritise the types of studies we do Research Process Review our proposals for research funding Designing and managing Help us write information sheets in easy language Disseminating Undertaking Help us carry out a focus group as either the group lead or in a support role
  • 12. Everybody is different For common conditions, such as asthma, patients are very much involved in the research process from the types of studies being done, to reviewing information sheets and disseminating results. With less common illnesses, are your needs and expectations with regards to the research process similar or different to people with a common condition, like asthma?
  • 13. Have your voice heard
  • 14. What is the VOICE study? We are looking to set up an advisory group that people who may be interested in getting involved in the research process can join. There is a lack of information on the development of such groups and the input of patients and the public in their creation. The voices of patients at conferences and events often suggest that people who get involved in the research process feel their involvement was merely to tick a box or they were unclear of their role. The VOICE study involves talking to you about what you would want/expect if you were to join such a group to see if we can develop a ‘gold-standard’ by which other researchers may follow in the development and creation of their own advisory groups.
  • 15. Join me… Saturday 26th October Britannia Country House Hotel Palatine Road Didsbury 12.30 till 2.30pm Lunch and refreshments provided We are able to offer you a payment of £25.00 for taking part and reimburse your travel expenses
  • 16. What we hope to achieve We want to set up a group where people can join and be given opportunities to get involved in the research process. We want to make sure that the people who join the group get the most out of it. We want people to have the opportunity to make a difference in research and have your voice heard.
  • 17. Contact details Danielle Yuill Clinical Project Manager Tel. 0161 291 5906 (Mon-Tue) 0161 291 5031 (Wed-Thu) Email. danielle.yuill@manchester.ac.uk Thank you for listening
  • 18. Suggest a subject Can be on any relevant subject you would like to hear our opinion or get our help with Send suggestions to admin@aspergillus.org.uk Pass notes to me at clinic or at the meeting Phone them in (24 hrs) at 0161 291 5866
  • 19. Normal Chest - bones
  • 20. Normal Chest – X-ray
  • 21. Normal Chest – blood & tissue
  • 22. Normal Chest – X-ray
  • 23. Normal Chest - Structures
  • 24. Normal Chest – X-ray Dense objects eg bones, cartilage, scar tissue appear white Air spaces appear black Multitude of areas of grey! Needs a practised eye to spot abnormality http://www.radiologymasterclass.co.uk/tutorials/ch est/chest_home_anatomy/chest_anatomy_start.ht ml
  • 25. Airways
  • 26. Blood Vessels
  • 27. Pleura
  • 28. Lobes of the lung (from the side)
  • 29. Diaphragm – higher on the right (liver)
  • 30. Abnormalities Look for asymmetry   Shapes Shading Scan as upper/middle/lower blacks Some asymmetry is normal
  • 31. Abnormalities - Pneumonia
  • 32. Abnormalities – infected blood clot
  • 33. Abnormalities – Smoker (COPD)
  • 34. Abnormalities – Pleura (Asbestosis)
  • 35. Invasive Pulmonary Aspergillosis Before itraconazole After itraconazole
  • 36. Chronic Pulmonary Aspergillosis (AIDS) Normal 4 years later
  • 37. ABPA ABPA right lower lung Improved after 1 week corticosteroids
  • 38. Tutorials Most of these slides came from the online tutorials in radiology http://www.radiologymasterclass.co.uk/tutorials/tut orials.html Lots more to see! Aspergillosis images came from the Aspergillus Website at http://www.aspergillus.org.uk/indexhome.htm? secure/image_library/medicalindex.php~main
  • 39. Poetry & Aspergillosis Event on Saturday 12th very successful 100 people attended Recording will be available in a couple of week
  • 40. Allergy caused by combined allergens  It is not known why some proteins make powerful allergens and others do not, we do not know enough about how a particular protein triggers the allergic cascade of events in our airways to be able to explain allergy adequately.  Herre et.al. have found that microbial lipopolysaccharide (LPS) interacts with cat dander allergen and that this interaction enhances the allergic response.  In a home with either cat dander or lots of bacterial growth (e.g. a damp home) there may not be much of an allergic reaction caused, but both together is more likely to cause health problems.
  • 41. ABPA & compost sorting  This new paper identified two cases of ABPA in a group of 38 workers. The prevalence of ABPA in the general population is thought to be 1 in 1000 - 1 in 3000 (Denning 2012) so frequency of 1 in 19 in this group of workers is very significant.  A larger study is now required to confirm these results but perhaps precautionary measures need to be taken from now on.
  • 42. Thank You “The best chance we have of beating this illness is to work together” Living with it, Working with it, Treating it Fungal Research Trust