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??.

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