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Affiliates Newsletter – July 2014

Welcome to the latest James Lind Alliance (JLA) newsletter. The JLA is coordinated by a small team at the National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre (NETSCC), based at the University of Southampton. We have had a number of staff changes since the last newsletter, with Beccy Maeso taking over from Sarah Fryett and Amy Street joining the team to support the JLA work. The team has had a busy few months; we are currently working with 21 active Priority Setting Partnerships (PSPs) and dealing with lots of enquiries about setting up new PSPs.

The new JLA team at NETSCC (Left to right): Beccy Maeso, Caroline Whiting and Amy Street

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 jla@soton.ac.uk. Below are updates from some of our PSPs.

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Alopecia Abby Macbeth, Clinician Researcher and Steering Group Member of Hair Loss PSP Hair loss (alopecia) is a common problem that has been shown to have a significant impact on psychological well-being and quality of life, and can sometimes also signify an underlying medical problem. Treatment of hair loss disorders is often challenging due to a number of factors, including limited understanding of the natural history of the condition, poor disease definitions, lack of validated severity scales and generally poor quality of evidence for treatment. Only a limited number of hair loss disorders have good quality randomised controlled trial (RCT) evidence to guide treatment choices. Further, access to supportive therapies (e.g. psychological support, wig provision, etc) can vary across the country and evidence for the most effective use of these interventions is generally poor. With kind funding from Alopecia UK, the British Hair and Nail Society proposed a priority setting partnership to encompass all types of hair loss with an aim of focusing clinical hair research on areas that meant the most to people with hair loss and clinicians/healthcare professionals alike. Inspired by previous PSPs in the field of dermatology, we hope to draw the attention of potential research funders to the unmet need in this distressing and under-researched group of conditions. The challenge of our particular PSP is how to reach, and harvest questions from, individuals representing many different, and rare, hair loss conditions. Many sufferers do not know their specific diagnosis and possibly do not seek treatment or are not able to access secondary and tertiary care specialists to achieve this. We feel that by keeping the process as open as possible we can harness expertise and opinions from individuals who have previously felt that their concerns and research priorities may have gone unheard. The process is off to a flying start with the initial survey under revision after a successful pilot, with the aim of the survey going live in early September. The steering group is currently in the process of identifying and engaging potential partners who will help publicise the survey. The steering group consists of 12 members including Jennifer Chambers (Patient and Admin lead), Paul Farrant (Dermatologist), Matt Harries (Dermatologist), Nigel Hunt (Psychologist), Andrew Messenger (Dermatologist), Carole Michaelides (Trichologist), Karena Moore-Millar (Patient and researcher in wig technology), Rachael Robinson (General Practitioner with Special Interest in Dermatology), Julie Rodgers (Patient), Jackie Tomlison (Alopecia UK trustee, nurse and patient), Sheela Upadhyaya (JLA Adviser and chair), and me (Dermatologist). For further information please see our web pages at www.alopeciaonline.org.uk/hairloss_PSP.asp.

Anaesthesia and Perioperative Care Oliver Boney, PSP Steering Group Co-ordinator

The Anaesthesia and Perioperative Care PSP is now well underway, with over forty professional and partner organisations - all of whom have affiliated with the JLA - enrolled to help publicise it to a wide range of stakeholders. The first phase is currently in progress: namely, an online survey of patients, the public and clinicians to identify future research areas and 'unanswered questions' within anaesthesia and perioperative care. Please take a look at the survey, which runs until the end of July, here: www.niaa.org.uk/PSP_Survey#pt

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What next? Once all the survey responses are in, a subgroup of the steering group will categorise all the suggestions, refining the proposed research questions and removing duplicate questions as they go. We will then undertake a comprehensive literature review to exclude questions that have already been (or are currently being) answered by previous or ongoing research. The remaining 'unanswered questions' will then be voted on by the PSP partner organisations; those that prove most popular will enter a final round of shortlisting in February 2015 to select the Top 10 most important research priorities for Anaesthesia and Perioperative Care. The people involved: A steering group of representatives from our partner organisations was chosen in January 2014, and comprises a balance of clinicians (some with decades of research experience), patients and carers. Their diverse backgrounds attest to the enormous scope of this PSP: anyone who's ever had an operation themselves, or looked after someone who's had an operation, plus any healthcare professional who works with surgical patients, is invited to contribute ideas via the online survey. The steering group meets once a month to discuss progress, and is capably chaired by Leanne Metcalf, who secretly described this as 'her favourite PSP!' To find out about the latest developments on this PSP, please see: www.niaa.org.uk/PSP The PSP wrote an article for the July edition of Anaesthesia News about the project. You can read it

here http://www.aagbi.org/sites/default/files/ANews%20JULY%20web.pdf

Childhood Disability Research Chris Morris, PSP Lead

This project focuses on interventions to improve the health and wellbeing of children and young people with ‘neurodisability’. Neurodisability includes conditions such as autism, cerebral palsy and various syndromes and other conditions that affect the brain and nerves. Neurodisability can impact on vision, as well as on hearing, movement, cognition, communication, emotion and behaviour. The final prioritisation workshop was held on 5 June at the Royal College of Paediatrics and Child Health in London. Participants in the workshop came from various regions of England. There were three young adults with neurodisability, seven parent carers, three representatives from generic child disability charities, a disability advisor in education, and eight health professionals (paediatrician, speech and language therapist, three physiotherapists, occupational therapist, nurse, orthopaedic surgeon); two other professionals sent apologies on the day. Three representatives from NIHR observed the meeting.

The group succeeded in prioritising the 25 uncertainties shortlisted from earlier stages, and a Top 10 was agreed. The steering group will meet again in September to review progress with our dissemination strategy. To find out more about the work and all the topics considered and prioritised, please visit http://www.bacdis.org.uk/research/psp.htm

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Here is the Childhood Disability Top 10: 1. Does the timing and intensity of therapies (e.g. physical, occupational and speech and language

therapy, ‘early intervention’, providing information etc) alter the effectiveness of therapies for infants and young children with neurodisability, including those without specific diagnosis? What is the appropriate age of onset / strategies / dosage / direction of therapy interventions?

2. To improve communication for children and young people with neurodisability: (a) what is the best way to select the most appropriate communication strategies? and (b) how to encourage staff/carers to use these strategies to enable communication?

3. Are child-centred strategies to improve children's (i.e. peers) attitudes towards disability (e.g. buddy or Circle of Friends etc) effective to improve inclusion and participation within educational, social and community settings?

4. Does appropriate provision of wheelchairs to enable independent mobility for very young children improve their self-efficacy?

5. Are counselling/psychological strategies (e.g. talking therapies) effective to promote the mental health of children and young people with neurodisability?

6. What is the (long term) comparative safety and effectiveness of medical and surgical spasticity management techniques (Botulinum neurotoxin A (BoNT-A), Selective Dorsal Rhizotomy (SDR), Intrathecal Baclofen (ITB), orally administered medicines) in children and young people with neurodisability?

7. Does a structured training programme, medicines and/or surgery speed up the achievement of continence (either/or faecal or urinary) for children and young people with neurodisability?

8. What strategies are effective to improve engagement in physical activity (to improve fitness, reduce obesity etc) for children and young people with neurodisability?

9. Which school characteristics (e.g. policies, attitudes of staff etc) are most effective to promote inclusion of children and young people with neurodisability in education and after-school clubs?

10. What is the long term safety, effectiveness and sustainability of behavioural strategies and/or drugs (e.g. melatonin) to manage sleep disturbance in children and young people with neurodisability (outcomes include time to onset, duration, and reducing impact on family)?

Depression Alison Cranage, Project Manager

The PSP for depression is now well underway. The steering group decided to change the name of this PSP to ‘Depression: asking the right questions’. Whilst priority setting means a lot to research funders, we wanted to experiment with putting the name on the tin, so to speak. We will keep you updated on any feedback we receive! We launched our survey to gather unanswered questions in May and we’ve had a great response with over 1,600 people taking the survey so far. Depression affects huge numbers of people, from all walks of life and sections of society. We are working hard to ensure our survey reaches out to everyone affected. We are currently aiming to recruit more men, those from BME communities and those aged 65+ to take part – as these groups are currently under-represented in our survey respondents. We are also looking to get more healthcare professionals to take part so we are working with the Royal Colleges and Mental Health Trusts to reach out to their memberships. To find out more and see our progress you can keep up to date on our website www.depressionarq.org We plan to close the survey in August and deliver our research priorities in spring 2015. Thank you to all the steering group and partners for all their dedication and hard work that have made this project happen.

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Endometrial Cancer PSP Richard Morley, JLA Adviser

A new James Lind Alliance priority setting partnership (PSP) is about to launch to identify and prioritise uncertainties in the treatment of endometrial cancer.

Dr Emma Crosbie, NIHR Clinician Scientist, Senior Lecturer and Honorary Consultant in Gynaecological Oncology at Manchester University is leading the establishment of the PSP and

explains “Womb cancer is the 4th most common cancer affecting British women, behind breast, lung and colon cancer. The past 20 years have witnessed a 40% increase in the incidence and a 20% increase in the number of deaths from womb cancer, despite improvements in overall survival. In 2010, more than 1,900 British women died from womb cancer, compared with just 1,500 at the turn of the century. Emma Crosbie “Despite these worrying statistics, womb cancer is relatively under-researched in the UK and internationally. Identifying the top priorities for womb cancer research is important in raising awareness and then finding funds to start tackling them. “I am passionate about the idea of researching areas that patients and their clinicians deem important rather than things that interest me.” The PSP will be launched later this year. A number of key organisations and individuals are already committed to being part of the JLA priority setting partnership. If you are interested in finding out more about this work or being part of it please contact Emma at emma.crosbie@manchester.ac.uk Hip and Knee Replacement for Osteoarthritis (OA) Sandra Regan, PSP Co-ordinator

The PSP on Hip and Knee Replacement for Osteoarthritis is excited to announce its Top 10 priorities, following the final workshop on 27th March 2014 at the Botnar Research Centre at The University of Oxford. 1. What are the most important patient and clinical outcomes in hip and knee replacement surgery, for

people with OA, and what is the best way to measure them? 2. What is the optimal timing for hip and knee replacement surgery, in people with OA, for best post-

operative outcomes? 3. In people with OA, what are the pre-operative predictors of post-operative success (and risk factors

of poor outcomes)? 4. What (health service) pre-operative, intra-operative, and post-operative factors can be modified to

influence outcome following hip and knee replacement? 5. What is the best pain control regime pre-operatively, peri-operatively and immediately post-

operatively for hip and knee joint replacement surgery for people with OA? 6. What are the best techniques to control longer term chronic pain and improve long term function

following hip and knee replacement? 7. What are the long-term outcomes of non surgical treatments compared with operative treatment for

patients with advanced knee/hip OA? 8. What is the most effective pre- and post-operative patient education support and advice for improving

outcomes and satisfaction for people with OA following hip/ knee replacement?

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9. What is an ideal post-operative follow up period and the best long term care model for people with OA who have had hip/knee replacement?

10. What is the best way to protect patients from the risk of thrombotic (blood clots, bleeding) events associated with hip/knee replacement?

Fifteen patients and carers participated in the workshop, including people who had experienced successful and not so successful hip or knee replacements, those waiting for an operation and some for whom a replacement wasn’t suitable treatment. Four of these participants were members of the PSP steering group. There were also 15 health professional workshop participants, including surgeons, nurses, physiotherapists, an anaesthetist, GP, rheumatologist, public health and acupuncture specialist. Six of these were members of the PSP steering group. It was a full day, and everyone worked hard to keep things moving, under the expert guidance of Sally Crowe, Lester Firkins and Richard Morley from the JLA Adviser team.

The final workshop report is available from the PSP Website http://www.ndorms.ox.ac.uk/hipkneepriorities.php The Next Steps The steering group is now working on a dissemination plan, to update partners, raise wider awareness of the Top 10 priorities and encourage uptake among research funders. Arthritis Research UK and The British Association for Surgery of the Knee are among those that have already committed to incorporating the priorities into their research strategies. Andrew Price (Professor of Orthopaedic Surgery at The University of Oxford) who was the clinical lead of the PSP will be submitting the results in a paper to the British Medical Journal. Sophie Petit-Zeman, Director of Patient Involvement, National Institute for Health Research (NIHR) Oxford Biomedical Research Centre which funded this PSP has interviewed Sandra Watson (part of the Oxford team) for an article commissioned by the Daily Telegraph which ran on 30th June 2014. http://www.telegraph.co.uk/health/10934260/Proof-that-good-research-starts-off-with-the-patients.html

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In addition to these high profile pieces, we will be promoting the Top 10 via partners and social media and they will also be available via The UK Database of Uncertainties about the Effects of Treatments (UKDUETs). Commenting on the process and publication of the Top 10, Sophie said “It’s really exciting to see the first Oxford JLA PSP reach a successful conclusion. It’s been heartening to see clinicians and patients work together in a way that for many was totally new – as equal partners in setting a research agenda that is likely to have a strong influence on how the future looks for those who need hip or knee replacements. JLA work is really taking off in Oxford now – the PSP on spinal cord injury is soon due to complete and several others are getting underway. This one certainly laid the ground through the dedication, tenacity and professionalism of those involved.” Sandra Watson who lives with her husband Drew near Newbury in Berkshire, adds: “I was surprised that the professionals were really eager to understand what concerns patients. At one meeting a surgeon said to me, with amazement, how much better the patients’ questions were than those from professionals. But it’s obvious why - we’re living with arthritis every day.”

Andrew concluded “The project has been a great success and has clearly shown the benefit of the JLA approach in engaging patients and all stakeholders in the process. I feel we have produced a very balanced meaningful list of priorities that are focused on patients”.

Kidney Transplant Simon Knight, Steering Group Representative

The Kidney Transplant PSP is making good progress, having held our first steering group meeting in London on the 19th May. The meeting ran very well, with lively discussion about how best to use previous experience and who and what to include in the scope of the PSP. Many of the key organisations identified by the steering group have signed up as partners, and we are in the process of recruiting others. The steering group now has representation from clinicians, patients, carers, donors and charities with an interest in kidney transplantation.

The PSP website is up and running (www.transplantpsp.org/kidney/) and we are currently preparing the pilot of our initial survey for testing prior to launch. We are also excited that our PSP will be used as a pilot to test a new framework developed to assess the impact of patient involvement in research. You can read more about this work at the PiiAF website (http://piiaf.org.uk/).

Mesothelioma Caroline Whiting, PSP Co-ordinator

Now that the survey asking for unanswered questions around the diagnosis, treatment and care of mesothelioma has closed, responses are being analysed. I know that every member of the organising team for the project is extremely grateful to all those who spent their valuable time responding to the questionnaire.

We heard from 453 people, including 103 patients, 82 health or social care

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professionals and 242 carers or bereaved carers. We had a good geographical spread of responses and heard from all of the professional groups that we wanted to hear from. This has given us the insight that we needed into what people felt were the ‘unknowns’ about diagnosis, treatment and care that concerned them most. We are creating our list of potential research questions, which will be verified against existing research and knowledge to check that they are all truly unknowns. The next step will be to ask patients, carers and clinicians which ones are the most important. In the meantime, the National Institute for Health Research (NIHR) welcomes proposals for applied research into mesothelioma and is asking specifically for “high quality proposals on any aspect of mesothelioma – its prevention, earlier diagnosis, treatment or care…” You’ll find more information here http://www.themedcalls.nihr.ac.uk/mesothelioma Please don’t forget to follow us @lindalliance and tweet using the hashtag #mesoPSP

Neuro-Oncology Laura MacDonald, Co-ordinator

Our PSP survey was launched on 1st March, the beginning of Brain Tumour Awareness month, and closed on 30th May 2014. This unique opportunity for healthcare professionals, patients and relatives to help influence the direction of future research was publicised extensively and we had hundreds of visitors to our website. Just under 200 people took part in the survey, submitting a total of over 600 questions. We also gathered patient and relative questions from a brainstrust charity event and searched the UK DUETS database of treatment uncertainties to include any relevant topics from there. We have translated all the questions into a standardised format and each of our 20 stakeholders has got involved in checking these to ensure that each question is an accurate reflection of the original submission. This process is almost complete. Since our last update, we have been pleased to welcome four new stakeholders to our group, who will help us ensure that the perspectives of young people and of allied health professionals are taken into account in the priority setting process. We are looking forward to a face-to-face meeting of our stakeholders in Liverpool on 9th July to coincide with the British Neuro-Oncology Society annual meeting. We are aiming to prioritise around 50 questions to go forward to a second open survey, which everyone will have the opportunity to contribute to over the summer. The date for our final PSP workshop is to be confirmed but will be in the autumn. To find out more, please visit us at www.neuro-oncology.org.uk or email jlagroup@exseed.ed.ac.uk The Neuro-Oncology PSP is led by Dr Robin Grant, Consultant Neurologist, Edinburgh, and guided by JLA Adviser Richard Morley. We gratefully acknowledge the financial support from Children with Cancer, brainstrust, Brain Tumour Research, the Cochrane Collaboration, NHS Lothian and the University of Edinburgh that has made this Priority Setting Partnership possible.

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Palliative and end of life care Jennifer Tuft, Project Co-ordinator

The Palliative and end of life care Priority Setting Partnership (PeolcPSP) will identify and prioritise what palliative and end of life care research is important to people who are likely to be in the last years of life, current and bereaved carers and families, and frontline social and healthcare professionals.

Palliative care helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It includes management of pain and other symptoms

and provision of psychological, emotional, social, spiritual and practical support for everyone involved, such as family, friends and carers. Palliative care offers a support system to help the family cope during the person’s illness and in their own bereavement. Palliative and end of life care is an under-researched area and requires greater attention and focus.

The survey officially closed on 30th April 2014, with an unpublicised extension until 16th May to allow for additional hard copies received via post to be entered into Survey Monkey. We received 1,403 responses. Some 48% of respondents identified as professionals working with those in the last years of life and 35% identified as bereaved carers or family members. Those in the last few years of life made up 4% of the responses. The steering group particularly focused on engaging with this group while the survey was open, and given the foreseen challenges of identifying and reaching people who are approaching the end of life, we felt that this is a satisfactory percentage.

Our team in Cardiff, including an Information Scientist overseen by Annmarie Nelson and Bridget Candy, are now analysing the responses to the survey. We have also formed a Data Assessment Group (DAG) to act as a ‘critical friend’ to the team analysing the responses we’re receiving. The dataset is being themed into seven categories: Managing Symptoms & Medication, Service Use, Perceptions of Palliative Care, Understanding Dying, Communications, and Support.

The analysis team is primarily searching for PICO formatted questions; however there are a significant number of qualitative research questions emerging from the dataset. As these questions are not within the remit of the JLA methodology, the steering group will be discussing what appropriate actions can be taken to ensure that these questions are captured and used to feed into service development and other more qualitative research in the future. We would be interested in hearing from other PSPs regarding what they have done with similar data!

We have also started planning the interim prioritisation, which we anticipate will launch in September 2014. For more information on the PeolcPSP, including a list of our stakeholders (numbering over 30 now) please visit www.palliativecarepsp.org.uk or email PeolcPSP@mariecurie.org.uk. For updates, follow us on twitter @PeolcPSP.

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Surgery for Common Shoulder Problems Professor Jonathan Rees, Clinical Lead

This PSP is nationally funded by the British Elbow and Shoulder Society (BESS), the British Orthopaedic Association and the NIHR Biomedical Research Unit and Centre in Oxford. The initiation phase was completed by March 2014 and after several steering group meetings the PSP survey was drafted, piloted and finalised. The survey was launched at a national level on Thursday 26th June 2014 at the BESS 2014 annual conference to a captive audience of 600 shoulder surgeons and shoulder physiotherapists. The PSP received high profile attention during the entire conference. Paper and online versions are also being disseminated by our list of partners. The survey will be open for 3 months. The web links below provide further information on this PSP including the online survey. www.ouh.nhs.uk/research/patients/priority-setting-partnerships/surgery-for-common-shoulder-problems.aspx

www.ouh.nhs.uk/shoulderpsp Spinal Cord Injury Dave Bracher, Steering Group Member

The Spinal Cord Injury PSP (SCI-PSP) offers a fantastic opportunity for people with experience of Spinal Cord Injury, Cauda Equina Syndrome and Transverse Myelitis to help shape future spinal cord injury research.

Since the last JLA Newsletter, we have finished reviewing, sorting and checking the 808 potential research questions submitted by 413 people through our initial survey. This was a really challenging and time consuming task, but it was completed on time and the Survey 2 – the Prioritisation Survey - was launched as planned.

The Prioritisation Survey went ‘live’ towards the end of April and was available for completion for 5 weeks until the end of May 2014. Given it’s occasionally complex or technical nature, the steering group were delighted that 293 completed responses were received for this Survey.

By the time you read this Newsletter, we will have held our Final Prioritisation Workshop on Saturday 5th July 2014 at Stoke Mandeville Hospital. We have assembled a diverse and highly experienced group of people, with tremendous knowledge of spinal cord injury, to review and discuss the 25 most popular questions from the Prioritisation Survey and identify our final ‘Top 10’. It’s been quite a journey, but the finishing line is in sight!

Further information about this PSP can be found at www.sci-psp.org.uk

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Members of the steering group

Organisations represented on the steering group

Stillbirth Alexander Heazell, PSP Steering Group Co-ordinator Leanne Metcalf, JLA Adviser and Steering Group Representative

Currently approximately 1:200 pregnancies in the UK end in stillbirth. This affects parents, their wider families and the health professionals caring for them. The stillbirth PSP aims to identify research questions relating to the understanding and prevention of stillbirth and how care for parents might be improved. The Stillbirth PSP website was launched in mid-May (www.stillbirthpsp.org.uk ).

The first survey to identify research questions was launched at the same time as the website. We have publicised the survey through our stakeholder organisations and partners. We have received over 450 responses to date from parents and professionals. We would like to thank everyone who has contributed and hope to receive lots more responses before the closing date of 14th July (www.stillbirthpsp.org.uk/survey ). We would like responses from parents and those affected by stillbirth and from those who care for parents. If you know of a relevant group with a meeting, newsletter or website please let them know about the survey or put them into touch with the PSP (alexander.heazell@manchester.ac.uk).

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Once the survey responses are complete, the Stillbirth PSP steering group will work with the Cochrane Pregnancy and Childbirth Group to assess whether research questions have been answered and to determine the quality of the studies addressing that topic. After identifying ‘unanswered questions’ we plan to generate our long list of questions in autumn 2014. We will then ask people to pick their top priorities. Although the Stillbirth PSP focuses on research questions for the UK, the PSP has also generated interest from the International Stillbirth Alliance who are interested in developing the methodology for international priority setting for stillbirth. The steering group is presently exploring this opportunity. Surgical Treatment for Early Hip and Knee Osteoarthritis Hilary Cullen, PSP Co-ordinator

As one PSP ends, another beckons; as the Hip and Knee PSP holds its closing meeting on 25th July, it is followed immediately after (on the same day) by the opening meeting in preparation for a ‘prequel’ PSP! The Early Osteoarthritis PSP will be looking at unanswered research questions about the stage of osteoarthritis before joint replacement is considered. Osteoarthritis can affect patients over a long period of time, and the different phases of the disease will present different uncertainties for patients and healthcare professionals. Some of the questions raised in the Hip and Knee PSP survey did not fall within the scope of that PSP. The many unanswered research questions about the earlier treatment options for patients, gave a clear signal that a further PSP would provide the opportunity for these to be considered. The decision to commence this second PSP has been widely welcomed. With funding secured by Andy Price and his team, and Sally Crowe continuing her role as chair, the Early Osteoarthritis PSP will focus on areas that could not be addressed previously. The steering group will be meeting regularly after the summer and aim to complete in autumn 2015. International news The JLA team is supporting a PSP running in Canada on Kidney Cancer and has received a number of other enquiries from Canada, so we look forward to being able to update you on other PSPs that may develop there. A group in Australia has used JLA methods to identify research priorities in Chronic Kidney Disease http://www.kidney.org.au/LinkClick.aspx?fileticket=zZc%2fBcOhA%2bA%3d&tabid=635&mid=1837 More about the JLA on the web Stay up to date and find out more about the JLA’s work at www.jla.nihr.ac.uk . The online guidebook on the website contains lots of practical guidance on establishing a PSP and working with patients and

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clinicians to identify and prioritise treatment uncertainties for research. It includes examples of work from existing PSPs, including documents and templates to download and use. Over 2,200 people currently follow the JLA on Twitter. To follow us visit www.twitter.com/LindAlliance. Sophie Petit-Zeman has written an interesting blog about the growing numbers of PSPs based at the Oxford Biomedical Research Centre http://oxfordbrc.nihr.ac.uk/blog/james-lind-alliance-work-gathers-pace/ The Lancet has published an article about the pre-term birth PSP and its priorities for research.

Current affiliates The JLA currently has over 700 Affiliates, most of whom are listed on our website. The Affiliates programme is for organisations and individuals who identify strongly with the objectives of the JLA, and want to express support for, be involved in, or simply be kept informed about the JLA’s activities. It’s quick, easy and free to become a JLA Affiliate. You’ll receive this newsletter by email and will become part of an ever-expanding network of decision-makers, influencers and pioneers committed to involving patients and clinicians together in research priority setting. If you’re not already an Affiliate, please go to http://www.jla.nihr.ac.uk/Affiliate_application_online.asp to sign up. PSPs have already been completed in: Acne, Asthma, Childhood Disability, Cleft Lip and Palate, Ear, Nose and Throat (aspects of balance), Dementia, Dialysis (Canada), Eczema, Hidradenitis Suppurativa, Hip and Knee Replacement for Osteoarthritis, Lyme Disease, Multiple Sclerosis, Pre-term Birth, 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. Keep in touch We hope you have enjoyed this newsletter. If you have any news or updates for inclusion in our next issue, please email jla@soton.ac.uk. We look forward to hearing from you. James Lind Alliance National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre University of Southampton Alpha House, Enterprise Road Southampton SO16 7NS Email: jla@soton.ac.uk Web: www.jla.nihr.ac.uk https://twitter.com/LindAlliance