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Offline community, VOICE focus meeting.

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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.

Published in: Health & Medicine
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Offline community, VOICE focus meeting.

  1. 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. 2. Programme 1.30 Graham  Quarterly Newsletter 2.00 VOICE
  3. 3. Quarterly Newsletter Version 1  Comments please!  Aim for launch 1st April?  Phone buddy system
  4. 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. 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. 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. 7. Stem cell latest - Discredited
  8. 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. 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. 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. 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. 12. …… Knowing you!Knowing you! We’d be grateful if you could introduce yourselves to the group
  13. 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. 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. 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. 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. 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. 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. 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

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