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Affiliates Newsletter – July 2013

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Affiliates Newsletter – July 2013 Affiliates Newsletter – July 2013 Welcome to the latest James Lind Alliance (JLA) newsletter. We’re very pleased to say that four new advisors have joined the JLA team, expanding the number of Priority Setting Partnerships (PSPs) that we are able to support. Leanne Metcalf, Tessa Clarke, Adrian Grant and Sheela Upadhyaya are working alongside Katherine Cowan, JLA Senior Adviser, and their work is being co-ordinated by Sarah Fryett and Caroline Whiting, who are the team based at NETSCC. They bring a great mix of past PSP experience and ongoing research interests, as well as new ideas and enthusiasm. The new team members were welcomed to the JLA in late March and are pictured here, alongside Lynn Kerridge, the CEO of NETSCC. Lynn commented “The JLA baton has now been handed to NETSCC, which is a big commitment and responsibility but also a great compliment. We’re looking forward to building on and evolving the truly ground-breaking work that the JLA has started.” The team is already busy working with PSPs and new enquiries and we’re delighted that they’re on board. To get in touch, just email [email protected]. (Left to right): Leanne Metcalf, Tessa Clarke, Sheela Upadhyaya, Lynn Kerridge, Adrian Grant, Katherine Cowan JLA Advisory Group As part of the migration of the JLA to NETSCC, a new JLA Advisory Group has been set up. The role of this group is to advise NETSCC on the on-going development of the JLA and PSPs. This is likely to encompass a range of issues including management of PSPs, new ways of working, strategic direction and maintaining and establishing new strategic alliances. Membership of the group is made up of the NETSCC team, the JLA Advisors and some external members who represent the key stakeholder groups of the JLA, namely patients and the public, charities and clinicians. We have a vacancy on the group for one patient representative and one clinician who have been involved with a JLA PSP. If you are interested in this role and would like more information, please contact Sarah or Caroline either by phone on 023 8059 5489 or by emailing [email protected]. 1 PSPs update JLA PSPs bring patients, carers and clinicians together to identify and prioritise for research the treatment uncertainties which they agree are the most important. Individuals or groups interested in forming a JLA PSP should visit www.jla.nihr.ac.uk to find out more and read the guidebook, or contact us by email at [email protected]. PSPs have already been completed in: Asthma, Cleft Lip and Palate, Ear, Nose and Throat (aspects of balance), Dementia, Dialysis (Canada), Eczema, Lyme Disease, Pressure Ulcers, Prostate Cancer, Schizophrenia, Sight Loss and Vision, Stroke in Scotland, Tinnitus, Type 1 Diabetes, Urinary Incontinence, and Vitiligo. More details of all of these are at www.jla.nihr.ac.uk. Over the next few pages you’ll find updates from the partnerships which are in progress, some which have very recently finished and one which is just preparing to start. Our thanks go to them for sharing their experiences. Acne Anne Eady, co-ordinator of the JLA Acne PSP writes: “The months of planning are over and our survey launched on 22 May. I promised to send Steering Group members weekly updates of the number of responses and couldn’t resist peeping anxiously at the numbers almost every day. Week one was a great start, with over 300 responses and week two was just as good. From then, the rate of responses has fallen but the total is slowly creeping up. Although we have already reached our conservative recruitment target, only a third of responses are from current acne patients. Less than one in every 10,000 people in the UK who have spots/acne have taken part so far. Why are we doing much better at motivating professionals and how can we engage more patients? Below are the reflections of two Steering Group members who have, in very different ways, helped to spread the word to many people. Here are Maggie’s thoughts. Maggie is lead research nurse for our local trust. “As someone with considerable experience of facilitating patient and public involvement, I am finding the JLA process a fascinating one which offers interesting insights into the logistics of getting people involved in research. By far the best way I have found so far is a direct personal approach from someone familiar, the more trusted the better. However, through connections with a number of teenagers/young adults who have helped us by reviewing our publicity materials, I have learned that they, with their social media connections, value a website where they can confirm the legitimacy of the survey and check who is asking for the information. This, it seems, is their accepted alternative for a trusted individual. It may be useful for future PSPs, especially those aiming to recruit young people, to identify the key components of websites which make them 'trustworthy' ”. And here’s a view from Nick who is a consultant dermatologist in Norwich. 2 “The email came out. The survey was live. Recruitment could start. I took a wad of advertising flyers and posters around our department, fly-posting them on every noticeboard, emailed 70 of our dermatology staff, the hospital communication department sent a message to all 5,000 staff – the flood of responses could begin. I left it a couple of days and wandered around the department to get feedback. How had they found the survey? Friendly, puzzled smiles “Which survey would this be?”.... “Oh, I saw that”...... “Yes will definitely do it”..... “What was the website again?”.... “Remind me what was it about?” Patients would be easier, thought I confidently: we have a dedicated acne clinic and in 18 years I have looked after acne in half of Norwich. Between us, the nursing staff and I made sure every one of them knew about the survey. We could only hope they might actually take part. Why does promoting the Acne PSP make one feel as listened to as a door-to-door salesperson for the 8th day church of Greater Uppington? People are busy, surveys are ten-a-penny, research seems intangible, and most of all the questions are hard. A few people confided in me “We found it really difficult to think of anything to say”. Good research questions are like ideas for novels. They arrive whilst walking down the street, whilst talking to patients, whilst listening to lectures, whilst chatting to friends. Most of us don’t think of them on demand. Ideas are like static electricity in our brains, little sparks that spit and die in an instant. Few people learn to capture the sparks and turn them into flames that can be nurtured and maintained. Fewer can create useful ideas on demand so it is a very difficult task to sit down for five minutes and produce a great research question. I’m now asking people to take a flyer, put it somewhere safe where it won’t be forgotten and do the survey in a day or so when they feel inspired. Which would we rather have? Tons of questions from people desperately racking their brains for something to write down so they can hit send and catch the bus, or fewer well thought out ones that really challenge the status quo? Now we’ve achieved our numbers, let’s give people space so we get quality as well as quantity.” We’re now at the half-way point between the opening and scheduled close of the survey and need to consider how we engage with patients in an attempt to balance the sample whilst not encouraging people to respond if they haven’t got a question that really matters to them. There is certainly plenty to think about as we approach the next phase of the project and begin to sort the submissions.” Childhood Disability Research Katherine Cowan, JLA Senior Adviser and Chair of the Childhood Disability Research PSP The aim of the Childhood Disability Research PSP is to identify the unanswered questions about the effectiveness of interventions for children and young people affected by neurodisability from both patient and clinical perspectives. Neurodisability includes conditions such as autism, cerebral palsy and various syndromes and other conditions that affect the brain and nerves. It can impact on vision, hearing, movement, cognition, communication, emotion and behaviour. 3 The survey is open and the response has been very positive, with coverage on Twitter and in the RNIB's magazine. We've had responses from a wide range of health and social care professionals, as well as families. However we are still keen to increase the responses from parents, carers and young people. Members of our Steering Group have taken paper copies of the survey to the youth groups and clubs they attend with their children, for parents to fill out and also, where appropriate, to help their child to complete. A member of our wider partnership has even offered to hold a PSP coffee morning where she'll distribute copies of the survey to fellow parents of disabled children. In addition to this, two Paediatric Neurodisability Trainees have reviewed relevant NICE and SIGN guidance and have catalogued research recommendations from those sources which will be added to our long list of unanswered questions. The survey can be completed quickly and easily online at www.bacdis.org.uk/research/psp.htm. The results of the survey will be analysed and checked, and the questions which are identified as being genuinely unanswered will go forward for prioritisation.
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