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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.
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LED BY GRAHAM ATHERTONSUPPORTED BY
NAC CENTRE MANAGER CHRIS HARRIS
VOICE FOCUS GROUP
DANIELLE YUILLNATIONAL ASPERGILLOSIS CENTRE
UHSMMANCHESTER
Support Meeting for Aspergillosis Patients &
Carers
Fungal Research Trust
Programme
1.30 Graham Quarterly Newsletter
2.00 VOICE
Quarterly Newsletter
Version 1 Comments please! Aim for launch 1st April? Phone buddy system
Sections decided at the last meeting
Topics sources from online support groupsLocal groups meetings (Calendar)Who’s who at NAC (Person or role description)News (any topic)Dates for diaryFacts about aspergillus/osisRecipePersonal newsCreative groups
Sections decided at the last meeting
Buddy system – phoneQ& A phoneline to ask medical staff (and
email if access)What leaflets are availableBrief description of the studies ongoing at
NACDamp homes/dust – preventionSeasonal advice – travel, gardening, Xmas treeAdvice carrying meds etcFundraising
New talks
New doctor (Possible June)Damp homes (August)SurgeonPractical help
Stair lift Welfare
Chris Harris – drug costs (May?)Next month our research leader Paul BowyerAvoiding fungus in daily life
Stem cell latest - Discredited
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_button_action_box&utm_medium=facebook&utm_source=share_petition
Suggest a subject
Can be on any relevant subject you would like to hear our opinion or get our help with
Send suggestions to [email protected] notes to me at clinic or at the meetingPhone them in (24 hrs) at 0161 291 5866
Today’s moderatorsDr Janelle Yorke & Danielle Yuill Dr Janelle Yorke & Danielle Yuill
Today’s observerCarole BresnenCarole Bresnen
Views of Individuals Concerning ResearchViews of Individuals Concerning ResearchFocus Group DiscussionFocus Group Discussion
Knowing me…Knowing me…
Dr Janelle YorkeSenior Lecturer in Nursing
Danielle YuillClinical Project Manager
Carole Bresnen Patient and Public Involvement Officer
… … Knowing you!Knowing you!
We’d be grateful if you could introduce yourselves to the group
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.
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
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.
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.
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?
Thank youThank you
Thank you for getting involved todayWe 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
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
