Danielle Yuill: Giving patients a VOICE project (Patients helping in research at NAC) http://www.uhsm.nhs.uk/racrf/Pages/involved.aspx. NB this meeting was confidential so audio is not broadcast in the second part of this support meeting.

1. LED BY GRAHAM ATHERTON
SUPPORTED BY
NAC CENTRE MANAGER CHRIS HARRIS
VOICE FOCUS GROUP
DANIELLE YUILL
NATIONAL ASPERGILLOSIS CENTRE
UHSM
MANCHESTER
Support Meeting for
Aspergillosis Patients & Carers
Fungal Research Trust

2. Programme
1.30 Graham
 Quarterly Newsletter
2.00 VOICE

3. Quarterly Newsletter
Version 1
 Comments please!
 Aim for launch 1st
April?
 Phone buddy system

4. Sections decided at the last meeting
Topics sources from online support groups
Local groups meetings (Calendar)
Who’s who at NAC (Person or role description)
News (any topic)
Dates for diary
Facts about aspergillus/osis
Recipe
Personal news
Creative groups

5. Sections decided at the last meeting
Buddy system – phone
Q& A phoneline to ask medical staff (and email if
access)
What leaflets are available
Brief description of the studies ongoing at NAC
Damp homes/dust – prevention
Seasonal advice – travel, gardening, Xmas tree
Advice carrying meds etc
Fundraising

6. New talks
New doctor (Possible June)
Damp homes (August)
Surgeon
Practical help
 Stair lift
 Welfare
Chris Harris – drug costs (May?)
Next month our research leader Paul Bowyer
Avoiding fungus in daily life

7. Stem cell latest - Discredited

8. Help us regulate damp industry
Change.org – look for petition to Eric Pickles for
better regulation of the damp surveying industry in
the UK & sign – many thanks!
http://www.change.org/en-GB/petitions/eric-
pickles-better-regulation-of-the-damp-surveying-
industry?
share_id=KWkZcfgEaK&utm_campaign=share_but
ton_action_box&utm_medium=facebook&utm_sou
rce=share_petition

9. 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

10. Today’s moderators
Dr Janelle Yorke & Danielle YuillDr Janelle Yorke & Danielle Yuill
Today’s observer
Carole BresnenCarole Bresnen
Views of Individuals Concerning ResearchViews of Individuals Concerning Research
Focus Group DiscussionFocus Group Discussion

11. Knowing me…Knowing me…
Dr Janelle Yorke
Senior Lecturer in Nursing
Danielle Yuill
Clinical Project Manager
Carole Bresnen
Patient and Public Involvement Officer

12. …… Knowing you!Knowing you!
We’d be grateful if you could
introduce yourselves to the group

13. What is the VOICE study?What is the VOICE study?
In clinical research, advisory groups often provide membership for
both patients and members of the public in order to form a group
of people interested in getting involved in the research process.
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 feel their involvement is merely to tick a box or they have
been unclear of their role in the research process.
This study involves talking to you today 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.

14. What is the research process?What is the research process?
Identifying and prioritising
Commissioning
Designing and managing
UndertakingDisseminating
Implementing
Evaluating impact
Research
Process
Influence how we prioritise
the types of studies we do
Review our
proposals for
research funding
Become a member of a
steering group (who look
after the management of a
study)
Carry out a focus group
just like this one
Help us spread
the word about
the results of
studies
Help us to
implement our
research findings
Tell us how you found
the experience and how
we can improve it

15. What we hope to achieveWhat 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.
But, we want to make sure that the people who join
the group get the most out of it.
To do that we’d like you to tell us what you would
want and expect if you were to join such a group.

16. What we’d like you to doWhat we’d like you to do
As a group we want to discuss some
questions that we have.
There are no right or wrong answers.

17. Our questionsOur questions
Before we told you about PPI, did you know what it was and that
such opportunities exist?
In which areas of the research process as a cough patient do you
think you might choose to get involved in?
If you were to get involved what would you want your involvement
to achieve?
What support and/or training do you think you would need in each
area of the research process if you were to get involved?
Where would you expect to find out about the group once it had
been set up?

18. Thank youThank you
Thank you for getting involved today
We will arrange for a cheque to be sent to you in the post covering
payment for your time and, in addition, your travel expenses.
Do not purchase a parking ticket from the machine on your way out,
simply press the buzzer on the barrier and tell the security officer you
have taken part in the VOICE study today.
We will tell you about the results of this study and the development of
VOICE in our “Chronic Cough: in focus” newsletter

19. Thank You
“The best chance we have of beating this illness is to
work together”
Living with it, Working with it, Treating it
Fungal Infection Trust