Steering Group meeting Mild-Moderate hearing loss Priority Setting Partnership

Transcription

1 Steering Group meeting Mild-Moderate hearing loss Priority Setting Partnership Date/Time Type Attendees: Friday 19 th September 1pm Teleconference David Crowe (Chair) Dr Helen Henshaw Dr Melanie Ferguson Linda Sharkey Robin Wickes Jean Straus Barry Downes Gemma Twitchen Dr Helen Pryce Natalie Bohm Venessa Vas Apologies: Next Meeting Type Dr Vinaya Manchaiah Tuesday 2 nd December 2014 at 1pm Teleconference Abbreviations AoHL BAA BSA NHBRU BSHAA Action On Hearing Loss British Academy of Audiology British Society of Audiology NIHR Nottingham Hearing Biomedical Research Unit British Society of Hearing Aid Audiologists

2 Agenda: 1. Progress update 2. Actions arising from last meeting 3. Review and discussion of protocol second draft 4. Review and discussion of webpage draft 5. Review and discussion of survey outline 6. Communication plan 7. AOB 1. Progress Update Helen H: Address Dedicated address has been set up for JLA PSP: Conferences BSA poster: Venessa got a few visitors at the conference (1 st -3 rd September), all of the hand outs were picked up. Positive feedback overall. BSHAA professional development day (13 th September):all delegates got a hand out Upcoming BAA conference: JLA PSP will have a stand, hand outs/flyers and updated poster. Hopefully this will coincide with survey launch. Project survey/ hand out will be disseminated at BAA regional board meeting on 24 th September. Venessa will attend and answer any questions. Jean Straus blog MRC insights Jean has written a blog that talks about the daily challenges of a hearing aid user/ issues about hearing loss and an article for AoHL. This coincides with grants that have been put forward about hearing aid technology. Link to the blog:

3 2. Actions arising from last meeting 2.1 Affiliate with the JLA ACTION: Steering Group members to affiliate to the JLA if member hasn t already done so this can be done individually and as an organisation. This is a way of showing commitment to the JLA. 2.2 GP Representative Steering group still does not have a GP representative. There has been some progress in trying to find a GP. Helen H has ed in touch with Dr Pargat Singh who is an ENT representative for Rushcliffe CCG however no response. Dr Peter Smith from PDS Medical/ Bloomfield Medical Centre (Blackpool) has also been ed however no response. A few other avenues that can be sought to find a rep however this has now become a high priority for the steering group. ACTION: Helen H will contact GP representatives for previous PSPs and see if they would be interested to get involved with the MMHL PSP. 2.3 Additional Partners Helen H will circulate a list of additional partners. Helen H has been looking at ways to promote the PSP and this has led her to the Cochrane ENT Group who have previously conducted the Tinnitus and Balance PSPs. Helen has been in contact with Sarah Faulkner (Cochrane ENT Group) who has directed her to Sarah Chapman who works for the UK Cochrane Centre, she has written systematic reviews in the past and now writes a blog called EvidentlyCochrane: Steering Group members may be particularly interested the article about hearing aid use: Sarah has demonstrated an interest in being actively involved in this progress. There may be a potential link with some work she is doing with Action on Hearing Loss.

4 ACTION: Steering group members to vote whether they would like Sarah to be a part of the group by Friday 26 th September. UPDATE: Sarah Chapman (UK Cochrane Centre, Hearing Aid User) has been voted in to the Steering Group. Bio: Sarah's work at the UK Cochrane Centre focuses on disseminating Cochrane evidence through social media, including Evidently Cochrane blogs on Twitter. She has a keen interest in exploring ways to share health evidence widely and encourage engagement with it, and in ensuring that research is shaped by the questions patients want answered. Before joining the UKCC in 2007, Sarah worked for a number of UK-based institutions, including the University of Oxford and the Royal College of Nursing Institute, conducting systematic reviews in many areas of health. She is also a qualified nurse and has a degree in History from the University of Oxford and in the history of women s health and illness in early modern England (MPhil., University of Reading). 2.4 Steering Group Input Helen H is in the process of outlining the administrative assistance (time and expertise) the process needs. Potentially it could mean short administrative work to help during the busier times of the project. She will circulate this nearer the time. Helen H will circulate a document with definitions of key terms for this process, particularly those mentioned in the protocol frequently e.g. Treatment (management/self-management). A few outstanding documents/ tasks which will be completed within a week. Steering group members are happy to sign off and move on from minutes of previous meeting. 3. Review and discussion of protocol second draft

5 Helen Pryce and Barry are concerned with the term Hearing Loss being perceived as a negative impairment. Helen suggested rewording as a normal experience that people go through. Please see dated 25/09/14 for way forward. ACTION: Helen H will circulate a document with definitions of the terms in this process and steering group members are to contribute to the definitions of these terms. ACTION: Steering group members are welcome to provide accompanying explanatory text that will be widely recognised clinically, socially, physiologically and positively by members of the public. Input from Action on Hearing Loss reps about any negative feedback from members from the public they have experienced would be useful by Friday 26 th September. Helen Pryce would like to know which expert qualitative researcher Nottingham Hearing BRU will have input from in the data analysis stage The JLA process involves putting together a separate protocol when we eventually get to collating survey results. This will include how the data is managed and how themes are developed and supported. Helen H is going to a training session in Manchester on the 17 th November about generating indicative questions and uploading to the UK DUETs database. ACTION: HH to circulate final protocol ASAP. ACTION: Steering group members to sign the final version of the protocol electronically if possible, however Helen H will post out copies of the protocol if required.

6 4. Review and discussion of webpage draft Any changes made to the protocol in terms of terminology will be amended in in the webpage drafts. The webpage has been created using a JLA template however it is quite long, general consensus is to condense down on the content before it is sent to the Hearing Link webmaster. Mel, Helen H and Linda are going to have a meeting regarding the webpage content/launch Progress since meeting: Helen H has stripped back the content of the webpage. Linda is happy with the new version and thinks it is clear and leaner and is now more manageable for the Hearing Link webmaster to work with. Linda will share with the steering group once the webpages are available for viewing. 5. Review and discussion of survey outline Some inconsistencies in the terms used in the documents however this will be amended. The data for the second question will not necessarily be used but is rather to help with the interpretation of the questions submitted. Helen Pryce is concerned with the wording of the first question and suggests that it is rephrased. Opening and closing times to be stated in the survey Information on UK Duets to be stated in the survey Relevant contact details to be inputted ACTION: Steering group members to suggest changes (preferably using track changes) in the documents and to Helen H by Friday 26 th September. ACTION: Helen H to send around second draft of the survey ASAP.

7 6. Communication Plan Helen H will circulate an excel document which will contain a list of ways to disseminate the project to the public and professional bodies. Helen is working on a document to list contact details of additional partners This PSP does not have enough funding within the budget for a big launch event. Suggested ideas include conferences, leaflets, changes to the s we send out on a daily basis, twitter, facebook etc ACTION: Vinay to feedback on progress of setting up a facebook page for this PSP. AoHL have Here to Help and regional information officers that can go out to people all the time and can help with handing out leaflets etc. When steering group have decided on final press release there must be consistency in the way the JLA project is promoted. Helen H will circulate a paragraph (which will be circulated for approval) along with leaflets for promotion of the project. Launch of survey is likely to be mid-october and will be live for approximately 10 weeks and needs to be monitored while it is live. ACTION: Helen H to circulate draft documents for PSP promotion/dissemination for comment ASAP. 7. AOB Barry has now joined Hearing Link as a trustee, however there is no conflict of interest. Whilst this changes the proportional representation in theory, Barry is not representing Hearing Link on this steering group, he is still representing BSHAA.

8 Gemma is taking a career break for 8 months volunteering for audiology services in Africa. She will be working and can be contacted up until 1 st December. Another representative from AoHL will be replacing her on the steering group. Survey round 1 expected to go live during October. Next Meetings: Tuesday 2 nd December 2014 (Teleconference) at 1pm Wednesday 21 st January 2015 (In person) at Nottingham Hearing BRU 11:30 to 15:30.