C O V E N T R Y W A R W I C K S H I R E WORCESTERSHIRE H E R E F O R D S H I R E Current Study – DAPA VOLUME NO 13 SPRING 2014 Clinical research in the region will receive a boost from 1st April 2014, with the launch of the National Institute for Health Research (NIHR) Clinical Research Network: West Midlands. New Study – LIPOS Midlands Paediatric Allergy Group (MPAG) Goodbye PCRN, Welcome CRN The three CLRNs in West Midlands, PCRN Central England and the Topic Specific Networks are merging into a single integrated Network for West Midlands, the Clinical Research Network (CRN) West Midlands. This transition is being done to achieve a more streamlined research network structure. The strengths across PCRN in engaging primary care, delivering high levels of participation in research, successful completion of studies, and high patient recruitment rates, will be carried forward into the new organisation. PCRN achieved great things, with approximately 20% of all studies being reliant on primary care input, approximately 30% of all recruitment coming from these studies and around 50% of practices having been involved in some research participation. Although there will be a new logo and name, the local primary care contacts will remain the same; existing network staff will remain as the first point of call with any queries or requests about primary care research participation. In that sense, it is business as usual! Having the opportunity to take part in research studies is important to the region’s patients and carers. According to a consumer poll carried out by Censuswide last year, 93% per cent of people in the West Midlands said that NHS doctors and nurses should always tell patients about clinical trials that would be suitable for them. National Association for Patient Participation (NAPP) CONTENTS 2-3 New Primary Care Studies 4-5 Research Update 6 Study Update 7 Local News PARTICIPATE New Start for Clinical Research Network: West Midlands POINTS OF INTEREST Current Primary Care Studies W E S T M I D L A N D S S O U T H P R I M A RY C A R E R E S E A R C H N E W S L E T T E R 8-9 Local Research 10 Readers’ Feedback 11 CLRN/Governance Update 12 In this edition we feature articles on: •taking part in a national observational cohort study looking at which symptoms and examination findings are most accurate for early identification of lung and colorectal cancer (page 2) •a new study looking at whether the combined use of Metformin SR and Liraglutide will improve menstrual regularity amongst women diagnosed with PCOS (page 5) •following up results on the Co-Creating Health initiative, a national programme which aimed to transform health care services so that people with long term conditions could take a more active role in their health (page 7) •HOPE, an innovative Skype and web-based self-management programme for people living with dementia, and their carers (page 8) Delivering research to make patients, and the NHS, better If you would like to contribute to Participate or for further information please contact Jenny Oskiera, email: j.oskiera@warwick.ac.uk Current Primary Care Studies CANDID – CANcer DIagnosis Decision rules Would you like to take part in a national observational cohort study? We are currently recruiting practices across Coventry, Warwickshire, Worcestershire and Herefordshire. CANDID is looking at which symptoms and examination findings are most accurate for early identification of lung and colorectal cancer. It is a multi-centre study led by Professor Paul Little at the University of Southampton, funded by the NIHR National School of Primary Care Research (NSPCR) and sponsored by the University of Southampton. Throughout the study GPs will provide usual care. GPs and practice nurses will be asked to identify and recruit participants, take informed consent, obtain and record clinical information, offer the option of taking a blood or saliva sample and undertake a medical notes review two years following recruitment. So far in West Midlands South, four practices have agreed to participate in this study, with more practices under consideration. Initiation visits will commence from April. For further information, or if you have any questions, please contact the research facilitators Jenny Lee, email: jennifer.lee@warwick.ac.uk or Julia Roscoe, email: j.roscoe@warwick.ac.uk or phone: 02476 575 919. Helicobacter Eradication Aspirin Trial Helicobacter eradication to prevent ulcer bleeding in aspirin users: a large simple randomised controlled trial Principal investigator Birmingham region: Prof Richard Hobbs. Locations: ~400 GP practices in Birmingham and Black Country, Worcestershire, Coventry and Warwickshire, Shropshire, Staffordshire, Herefordshire, Stoke, Telford and Wrekin, Wolverhampton, Sussex & Surrey, Nottingham, Durham, Southampton, and Oxford. Enrolment Period: 2012 – June 2014 Participants: Men and women aged 60+, infected with H. pylori, who are using aspirin <326mg daily Other Information: This trial has been preceded by a successful pilot study, funded by the MRC. Practices will be reimbursed for their time. Use of aspirin for cardiovascular prophylaxis is widespread and increasing. The main hazard is ulcer bleeding. This is usually associated with H. pylori infection. It is important to determine whether this can be reduced or prevented by H. pylori eradication. The trial hypothesis is that aspirin does not itself cause peptic ulcers, but that it promotes bleeding of ulcers caused by H. pylori. Given the scale of aspirin use, its continuing increase and its contribution to ulcer bleeding, how to deal with this problem is arguably the most important question with regard to current iatrogenic medicine. Intervention and Clinic: Suitable patients will be identified by their surgery, using an automated search, and then asked to attend an appointment with a University Research Nurse or Practice Nurse (relevant training will be provided) to consent to the trial and take a H. pylori breath test. Those with a positive result will be randomised to receive a one week course of either eradication treatment or placebo, supplied by the trial centre. No follow-up visits for the patients are required, but any hospital admissions for ulcer bleeding will be recorded over a period of 2-3 years by the trial centre. Further information: If you would like to find out more, please contact the trial manager for your region, Rachel Iles, phone: 0121 414 2691, email: r.iles@bham.ac.uk Page 2 Current Primary Care Studies Brief intervention for Weight Loss The invitation to GPs to contribute to a trial of a very brief intervention to help patients lose weight is still open. We invite you to participate in BWeL, a randomised controlled trial testing the effectiveness of GPs’ 30-second opportunistic intervention to support weight loss in obese adults. Recruitment is progressing well, with around 860 participants enrolled so far. We are looking to recruit almost another 1000 patients from GP practices across England. Why is this trial important? 25% of the UK’s adult population is obese and modest weight loss reduces the incidence of type II diabetes and cardiovascular disease. Recent evidence demonstrates that commercial weight loss services, available to NHS patients on prescription, can lead to clinically significant weight loss (see related report on Lighten Up; www.bmj.com/ content/343/bmj.d6500). Your involvement as a GP For patients assigned to the intervention group, ‘practical support’, you would explain that weight loss is more successful with the support of a commercial service and offer a free referral accompanied by a progress review appointment in a month’s time. In the control group you would encourage weight loss by stating the benefits to health. Both approaches are opportunistic and very brief. If you feel patients require more than 30 seconds, you could offer them Dementia and Physical Activity We are currently working with GP practices in the West Midlands South and seeking people with mild to moderate dementia who may wish to take part in a study. The DAPA study aims to show whether a programme of exercise can have a beneficial effect on cognition (memory and understanding) as compared to usual care. another appointment for more detailed discussion; we will provide you with appropriate training for this. What are the benefits of participating in BWeL? • Patients randomised to ‘practical support’ will be entitled to 12 free sessions with a commercial weight loss service (Rosemary Conley or Slimming World) • Socio-demographic, height and weight data will be collected for all patients attending during BWeL recruitment sessions, and can be used to update medical records • Costs for taking part are covered • The BWeL training contributes towards CPD and can be implemented and reflected upon for double points Principal investigators: Dr Amanda Lewis and Prof. Paul Aveyard, Dept. of Primary Care Health Sciences, University of Oxford. We are looking for GPs to identify patients who have: • Mild to moderate dementia • Are able to walk about 10 feet • Live at home Participants who are allocated to exercise will exercise with around five other people twice a week for four months. Classes will be held in local exercise venues. Travel expenses will be reimbursed. Practices will be reimbursed for their time and efforts. Throughout 2014, the DAPA study will be running exercise groups in the following areas: Stratford-upon-Avon, Warwick, Coventry, Rugby and Nuneaton, Worcester, Bromsgrove, Redditch and Kidderminster. Image courtesy of Apolonia at FreeDigitalPhotos.net If your practice is interested in taking part, please contact Sarah Clarke, Trial Coordinator, phone: 07865 617958, email: sarah.clarke@phc.ox.ac.uk If you are interested in receiving more information, please contact the team quoting ‘DAPA’ phone: 02476 150 955 or email: DAPA.Trial@warwick.ac.uk Page 3 New Primary Care Studies Developing indicators for the Quality and Outcomes Framework (QOF) Researchers at the University of Birmingham in the National Collaborating Centre for Indicator Development have been working with the National Institute for Health and Clinical Excellence (NICE) since 2009 to develop and pilot potential new indicators for the Quality and Outcomes framework. During this time we have piloted over 75 new indicators, and work continues. As part of the piloting process we work with 34 GP practices in England. These practices implement the potential new indicators for six months each year as well as completing workload diaries and pre- and post-pilot audits of achievement. At the end of the six months, practice staff are interviewed and their views sought as to whether the indicators should be considered for inclusion in QOF and their reasons. Practices who have worked with us describe the process as being interesting and a real opportunity to influence the future direction of the QOF. We are continuing to recruit GP practices to work with us until 2016. If you would be interested in finding out more about this study please contact Rachel Foskett-Tharby email: r.fosketttharby@bham.ac.uk or Dr Paramjit Gill email: p.s.gill@ bham.ac.uk Here to Stay Research into the needs, experiences and outcomes of health and social care services of people with learning disabilities from ethnic minority communities, including new migrants, living in England The Department of Health recognises that while progress is being made, people with learning disabilities from ethnic minority communities, including new migrants, have difficulties in accessing appropriate services and face substantial inequalities and discrimination in health and social services. Commenced in July 2010, ‘Here to Stay’, is a five year national research project that aims to provide evidence about prevalence, needs and service requirements of people with learning disabilities from ethnic minority and new migrant communities. To address these issues, we are using retrospective data collection and prospective surveys, focus groups, semi-structured interviews and consensus building methods as our approach to collecting data. We are using this multimethod approach to ensure that we capture the richness and depth of the experiences of our partners in the research. We put these outcomes to a representative sample of key stakeholders in a consensus building conference. Our aim is to produce a national set of guidelines that will best assist service commissioners and providers to make services both available, and visible, to migrants who may not otherwise know about them and their entitlements. In the last phase of the study we will select a pilot site to test the guidelines and examine the extent to which they impact upon an increase in numbers of migrants using learning disability services, their experience of the service and improved outcomes. Your involvement If you would like to participate in our study, we would like you to complete our online survey available on the project’s website: http://arcuk.org.uk/heretostay/ For further information, please contact Dr Olga Kozlowska, Centre for Health and Social Care Improvement, University of Wolverhampton, email: o.kozlowska@wlv.ac.uk Page 4 New Primary Care Studies Benefits of Aldosterone Receptor Antagonism in Chronic Kidney Disease Trial Objectives To determine whether the addition of an aldosterone receptor antagonist (ARA) in patients with moderate Chronic Kidney Disease (CKD): • reduces death • reduces onset, or progression of, cardiovascular disease • improves measures of vascular resistance • improves left ventricular function • reduces decline in renal function Background Better treatment options providing protection from vascular events or delaying progression of CKD are urgently needed. There are limited therapeutic options to reduce overall cardiovascular risk in CKD. Accumulating data suggest ARAs may offer cardio-protection and delay renal impairment in some patients. BARACK D is the only current large prospective randomised open blinded endpoint trial (PROBE) focussing on this theme. Recruitment 120 practices are being recruited nationally. Patients identified by their GPs with a diagnosis of CKD Stage 3b will be invited to take part, with approximately 22 per practice enrolling. Participation For the 36 month follow-up, patients will be randomised to either: a) treatment plus standard care b) standard care alone ARA for CKD – the “renal aspirin”? For further information, please contact Dr Ben Thompson, senior trial manager, phone: 01865 289 296, email: ben.thompson@phc.ox.ac The Lipos Study: Liraglutide in PCOS Principal Investigator: Dr Harpal Randeva Location: University Hospital Coventry and Warwickshire, with recruitment from UHCW, George Eliot and Warwick Hospitals as well as NHS Community Health Clinics and GP practices within Coventry and Warwickshire. Enrolment Period: October 2013 - December 2014 Participants: Women with PCOS Study Details The Lipos (Liraglutide in PCOS) study has recently begun recruitment in the Coventry and Warwickshire area. Lipos is a prospective, randomised, double blind, placebo controlled study investigating the use of Liraglutide alongside Metformin SR to improve fertility and symptom control in women diagnosed with Polycystic Ovary Syndrome. The study is funded by Novonordisk, sponsored by the University of Warwick and hosted by UHCW. The study aims to establish whether the combined use of Metformin SR and Liraglutide will improve menstrual regularity amongst women diagnosed with PCOS. Secondary outcome measures include improvements in other symptoms and effects of the condition including hirsutism, metabolic syndrome and difficulty controlling weight and acne. We aim to enrol 106 participants, who will all receive Metformin SR, with randomisation leading to 50% receiving Liraglutide and 50% receiving a placebo. Participants will need to attend UHCW on a number of occasions (17) over a period of 62 weeks, with multiple data being collected by study clinicians at each visit to measure a wide range of metabolic and cardiovascular parameters. Potential participants should be over 18 and diagnosed with PCOS. If you would like to be involved, or for more information, please contact Dr Randeva email: harpal.randeva@ warwick.ac.uk or the study nurse, Kay Webb, email: kathryn.webb@uhcw.nhs.uk Page 5 Research Update Major New National Research Programme – your Participation Invited CRN: West Midlands is fully committed to inviting all practices to join the Clinical Practice Research Datalink (CPRD) a secure, world-class, e-health research system jointly funded by the National Institute for Health Research (NIHR) and the Medicines and Healthcare products Regulatory Agency (MHRA). We ask you to fully support this important initiative by enabling access to your practices’ anonymised data for research. Data security Data security, together with patient and practice confidentiality, is CPRD’s number one priority. Indeed, Sir Bruce Keogh, NHS Medical Director, and Sir Kent Woods, MHRA Chief Executive Officer, who are the Caldicott Guardians of the NHS and MHRA respectively, have both fully endorsed CPRD’s data security arrangements. CPRD collects all coded data (diagnoses, treatments, referrals, lab results, demographics) against a CPRD identifier. CPRD does not receive NHS numbers, names, addresses or post codes. CPRD is working with the major GP IT systems (Vision, EMIS, TPP) on data collection; this happens automatically, does not interfere with existing systems or the normal day to day running of a practice and require very little input from practice staff after the initial set up. Benefits of participation • Data feedback can help improve the quality of practice data, which may help to stimulate improvements in QoF or other similar schemes. • Submitting data to CPRD is an easy way to contribute to important public health research which in turn translates to improved evidence-based patient care and potential new medicines. “Involvement in CPRD has been beneficial in helping us improve quality of care at our practice, as we are able to review what we do, compared with the national average. The staff at CPRD are always helpful, although we rarely need to contact them as the whole thing requires little to no effort. The income from participating helps too. Data is taken electronically in a secure manner and in an anonymised format.” Rachel Vial, Practice Manager, Shipston Medical Centre, Warwickshire “CPRD is invaluable for research – we can collect large amounts of anonymised routine clinical data without the need for practice involvement, therefore reducing the burden on practices having to supply outcome data for research they are involved in. The PLEASANT study is using CPRD to collect routine clinical data on approximately 14,000 school aged children with asthma over 18 months. Asking GP practices to complete individual CRFs to capture every medical contact (both in and out of hours) for every child (average 100 patients/practice) would have been a huge task. The PLEASANT trial recruited to time, target and delivered the intervention per protocol across 142 practices in England and Wales. We will receive complete outcome data from all sites for all participants – this would not have been achieved without practices being linked to CPRD.” Dr Michelle Horspool, Pleasant Trial Manager, Sheffield Clinical Trials Unit To sign up or to ask additional questions please contact the team at CPRD directly, CPRD Knowledge Centre, phone: 020 3080 6383, email: kc@cprd.com or website: www.cprd.com Research Design Service (RDS) If you would like any further information, please contact us on rds@warwick.ac. uk or via www.rds-wm.nihr.ac.uk Page 6 Do you have a good research idea that you’d like to develop further into a grant application? The RDS can help by providing methodological expertise and advice on all aspects of research design. The RDS exists to provide help and advice to NHS researchers and others working in partnership with the NHS in preparing research proposals for submission to peer reviewed funding competitions. As the RDS is funded by the NIHR such help is provided free of charge. Here are some of the ways we can help: • F ormulating research questions •B uilding an appropriate research team • Involving patients and the public •D esigning a Study • Appropriate methodologies for quantitative and qualitative research • Identifying suitable funding sources •R egulatory issues • Writing lay summaries • Identifying the resources required for a successful project Study Update Evaluation of the Co-Creating Health initiative selfmanagement programmes for long-term conditions (CCHi) What was the Co-Creating Health Initiative? The Co-Creating Health Initiative (CCHi) was a national programme, funded by The Health Foundation, which aimed to transform health care services so that people with long term conditions could take a more active role in their health. The programme was delivered between November 2007 and September 2010, and included three strands of action: •A n advanced development programme for clinicians to develop the skills required to support and motivate their patients to take an active role in their own health •A self-management course for people with long-term conditions to develop the knowledge and skills they require in order to manage their long-term condition and work in effective partnership with their clinicians •A n organisational development programme to support patients and healthcare professionals, working together, to identify and implement new approaches to health service delivery which enable patients to take a more active role in their own health. Local Involvement in Co-Creating Health Coventry and Warwickshire Partnership Trust, University Hospitals Coventry and Warwickshire NHS Trust, NHS Warwickshire PCT and NHS Coventry PCT were all involved in this study. Coventry and Warwickshire were comparator sites in the main evaluation for depression and diabetes.This means that the improvement programme and self-management programmes were not run locally. Instead, patients were recruited and completed many of the same evaluation outcome measurements as in areas where the programme did take place. This allows for comparisons to be made between sites where the programme was run, and sites where it did not run. The particular analysis presented here does not include the data from the local population. A team from the Applied Research Centre in Health and Lifestyle Interventions at Coventry was awarded funding to evaluate the Co-Creating Health Initiative (CCHi) for improving the care for people with long-term conditions. The evaluation has used mixed-methods to determine both the effectiveness of the initiative for improving health outcomes and to understand the process of change and improvement that has resulted from the initiative. The team recently presented the results of the self-management programmes at the UK Society for Behavioural Medicine Conference in Oxford. The content of the self-management programmes was modelled on the lay-led, generic Expert Patient Programme. They were co-delivered by health professional and peer tutors. The programmes contained behavioural change techniques such as goal-setting, action planning and problem solving, plus condition specific content. Programmes focussed on four long-term conditions: diabetes, musculoskeletal pain, depression and chronic obstructive pulmonary disease (COPD) Condition-specific results Diabetes: 77% patients completed the course. 60.2% showed a meaningful improvement in patient activation scores. There was also a significant improvement in diabetes-related quality of life but not health-related quality of life. There were no improvements in health status, depression or anxiety levels. Musculoskeletal pain: 69% of patients completed the course, and 50.3% of those showed meaningful improvement in patient activation. Health status, anxiety and depression and self-management skills were also significantly improved. Depression: 69% of patients completed the course and 56% of those showed a meaningful improvement in patient activation. Health-related quality of life, health status, anxiety and depression and self-management skills also significantly improved. COPD: 79% of patients completed the course and 49.5% of those showed a meaningful improvement in patient activation and felt more mastery of their condition. 1170 patients completed measures before the programme and 588 completed measures six months afterwards. Across all four conditions, 54% of patients showed a meaningful (>4 point) improvement in patient activation, which means there are more likely to carry out self-care activities. Health-related quality of life, health status, anxiety and depression were also significantly improved six months after the programme. Clinician results Clinicians from CCHi participating sites were offered an opportunity to attend Clinicians’ Advanced Development Programme (ADP) - training for healthcare professionals working with patients with long term conditions that addresses the principles and practice of self-management support and teaches four specific techniques that have demonstrated an impact on the clinician-patient relationship and can be used during clinical consultations. The four key skills include: • establishing an empathic clinician-patient relationship • joint agenda setting for each consultation • collaborative goal setting, exploring ambivalence about change •using problem-solving skills and using systemic tools to support goals’ follow up The ADP recruited 665 clinicians and 465 completed the programme. 489 clinicians completed the baseline measures before attending the programme and 407 completed post ADP measures. Attending ADP programme increased clinicians’ confidence to support self-management and increased using clinical self-management support practices (including building an equal clinician-patient relationship, using behaviour change processes and exploring the patient’s self-management strategies) and patient centred practices (including customising the treatment to a patient’s preferences and taking an individualised approach). In interviews clinicians confirmed that the training increases use of self-management support practices, however some found ADP techniques irrelevant and difficult to use. For further information, please see the full report: http://www.health.org.uk/publications/ co-creating-health-evaluation-phase-1/ Page 7 Local News New Primary Care Based Support Service for Family Carers Family carers are your most valuable partners – the value of the care they provide is equivalent to another NHS – about £500m in Coventry. 10% of your patients are family carers. Make sure you identify them and refer them to the support services available. GP Based Carer’s Support Clinics are available at the following Surgeries: VENUE LOCATION DATE TIME Balliol Road Surgery Broomfield Park Medical Centre City of Coventry Health Centre Copsewood Medical Centre Edgwick Medical Centre Forrest Medical Centre Forrest Medical Centre Jubilee Health Care Jubilee Health Care Longford Medical Centre Sky Blue Medical Centre Sky Blue Medical Centre Paradise Medical Centre Stoke Aldermoor Medical Centre Tile Hill Health Centre Willenhall Oak Willenhall Primary Care Centre Westwood Medical Centre Baliol Road Spon End Stoney Stanton Road Momus Boulevard, Binley Queen Mary’s Road Mount Street Prior Deram,Canley Station Ave, Tile Hill Westminster Road Longford Road Green Lane Harnall Lane East Broad Street The Barley Lea Limbrick Wood, Woodside Dr Sadrani Remembrance Road Remembrance Road Tile Hill Lane Every Friday afternoon Last Thursday of the month Every Monday Thursday fortnightly Every Tuesday Monday fortnightly Friday fortnightly Last Friday of every month Last Friday of every month Every Monday Thursday fortnightly Every Monday Every Tuesday or Wednesday Friday fortnightly Every Monday First Tuesday of the month Every Tuesday 4th Wednesday of the month 2.00pm – 4.30pm 9.00am – 12.00pm 9.15am – 1.15pm 2.00pm – 5.00pm 9.00am – 12.00pm 2.00pm – 6.00pm 8.30am – 12.30pm 9.00am – 1.00pm 2.30pm – 5.00pm 2.00pm – 5.00pm 8.00am – 1.00pm 9.00am – 12.00pm 9.00am – 12.00pm 2.00pm – 6.00pm 2.00pm – 6.00pm 2.00pm – 5.30pm 9.00am – 1.00pm 2.00pm – 5.30pm If you would like a Carers’ Clinic to be set up at your surgery, please contact us at Coventry Carers’ Centre. Refer family carers to us through the GP Gateway or Contact Coventry Carers’ Centre, phone: 02476 632 972, email: contactus@coventrycarers.org.uk Bringing HOPE to People Living with Dementia and their Carers Audit of Injection Therapy Clinics Performed by Physiotherapists in Primary Care Globally there is a new case of dementia every four seconds; by 2020 there will be nearly 70 million people living with the condition. Five NHS physiotherapists within the Worcestershire Health and Care NHS Trust each kept a record of all patients they saw for injection therapy, between 1st October and 30th November 2012 inclusive. West Midlands Academic Health Sciences Network (WM ASHN), through their digital theme, have funded the researchers at the Applied Research Centre in Health & Lifestyle Interventions at Coventry University to further develop the innovative HOPE Skype and web-based selfmanagement programmes for people living with dementia, and their carers. WM ASHN aims to improve the identification, adoption, spread, speed of innovation and good practice in the NHS by supporting the NHS and academia to work collaboratively with industry. The project will run for 12 months from March 2014. When assessing pain-scales, patients were asked to verbally rate their pain between 0 and 10, with 0 representing no pain and 10 representing very severe pain. After performing the injection an assessment sheet was completed. This was then passed to a Senior Administrator who later telephoned patients for assessment of pain scores at two and four weeks post injection. A total of 101 injections were analysed which had complete results at weeks zero, two and four weeks post injection. All average pain scale scores were reduced four weeks after injection for all conditions. Contrary to a common patient perception, injection therapy is not an exceptionally painful experience, with an average score of 3.2 out of 10. If you would like further details please contact Dr Andy Turner, email: a.turner@coventry.ac.uk Page 8 If you would like further information please contact Gordon Smith, University of Worcester, phone: 01905 542585 or email: g.smith@worcs.ac.uk Local News Public Involvement and Lay Accountability in Research (PILAR) 6th March saw the launch of a new public involvement forum for the West Midlands PILAR is a regional leadership group that comprises representation from: • The Academic Health Science Network (AHSN), • Collaboration for Leadership in Applied Health Research and Care (CLAHRC), • Research Design Services (RDS) • Local Clinical Research Network (LCRN) Midlands Paediatric Allergy Group (MPAG) The National Pollen and Aerobiology Research Unit (NPARU) at the University of Worcester is hosting the Spring 2014 meeting of the Midlands Paediatric Allergy Group (MPAG) at the City Campus on 9th May. The MPAG is organised by Dr Nick Makwana, Consultant Paediatrician at Sandwell and West Birmingham NHS Trust with the aim of sharing best practice in managing children with allergies, discussing interesting cases and hearing talks from leading researchers and practitioners in the field. Professor Roy Kennedy, Director of NPARU, says Key values and objectives of PILAR The main focus of PILAR is the PCPIE strategy in the West Midlands, encouraging lay accountability at all levels, capturing the views of patients, service users, carers and members of the public and continuing to develop the research culture amongst health care professionals, academic researchers and the wider NHS community. The West Midlands PCPIE strategy has 4 objectives to involve patients, carers and members of the public at all levels of research: 1. Lay accountability: patient involvement in key decisions 2.Involvement in the generation, conduct & analysis of research: give opinions on research ideas, design and documentation to improve patient experience and deliver patient-centred services 3.Engagement in the wider endeavour: support better access to and awareness of research studies 4.Evaluation: measuring the impact of PCPIE methods on research study recruitment and outcomes PPG Awareness Week 02 - 07 June 2014 PPG Awareness Week aims to promote the role and benefits of PPGs to patients, the public and health professionals, to create more understanding of the value of true patient participation also to promote the support available from the National Association for Patient Participation (NAPP). National Association for Patient Participation (NAPP) Research Engagement Award There is a new annual prize for Patient Participation Groups (PPGs) of £500 sponsored by NIHR CRN. This is to encourage PPGs to become actively involved in raising awareness about research to patients, carers and healthcare staff. The award is to be introduced at the NAPP Annual Conference on 7th June by Simon Denegri. The next couple of months will see the launch of a new NIHR CRN Primary Care PPG Research Engagement Toolkit, which can be found in the award application pack. For further information on NAPP, please visit: www.napp.org.uk/ “We are delighted to welcome the Midlands Paediatric Allergy Group to the University. It is appropriate that the meeting is being held at our City Campus in what was the board room of the Old Worcester Infirmary.” Dr Adam Fox, Consultant & Reader in Paediatric Allergy at Guy’s & St Thomas’ Hospitals NHS Foundation Trust, is giving the keynote talk on immunotherapy in aeroallergen sensitisation. There will also be talks by Professor Kennedy on climate change and airborne allergens, Dr Tom Dawson, Consultant Paediatrician at Worcestershire Acute Hospitals NHS Trust on Food Allergy Syndrome and from Lynne Regent, Chief Executive of The Anaphylaxis Campaign, on how the charity can help with education on this condition. For further information, please contact Louise Robertson, Researcher, National Pollen and Aerobiology Research Unit, University of Worcester, email: l.robertson@worc.ac.uk or Nick Makwana, email: nmakwana@nhs.net Page 9 Local Research Recruitment to Time and Target: Challenges, Problems and Opportunities Peter Zeh, Recruitment Network Facilitator (Clinical Trials) Why take part in research? Individual patient benefit: improved patient care, access to cutting edge treatment and to staff with specialist knowledge; the possibility that during screening other undiagnosed medical conditions may be identified and treated promptly; joining a trial can reduce a patient’s feeling of isolation by seeing others with similar conditions, and boost morale. General patient benefit: improved treatment, identified in a study, can be cascaded by the general practitioner through to all other patients with the same condition. Practitioner benefit: Working within and across and organisational boundaries in testing innovations; the assurance that their patients will be receiving the latest treatment; access to a specialist knowledge base; additional training for staff; raising of practice profile; contribution towards QOF and personal CPD. Organisational benefits: Surrogate indicator of high quality care; more incentives/funding could be awarded to GPs which recruit to time and target. “. . . a virtuous circle of improved patient care. . .” Obstacles to participation Practitioners may feel they lack the time to engage in research which may eventually prove not be of patient benefit. Without experience of the possible benefits of engaging in research patients may lack the confidence to suggest their practice might participate. How to encourage engagement The most important factor for any research facilitator to remember when making contact with a potential practitioner or participant is the impact of the personal touch. Building a To contact Peter Zeh, email: p.zeh@warwick.ac.uk Herefordshire Research Awareness Day Research Awareness Stand Monday 19 May 2014, 10:30 – 14:30 Lecture Theatre, Postgraduate Medical Centre, Hereford County Hospital Tuesday 20 May 2014, 10:00 – 14:00 Hereford County Hospital Wye Valley NHS Trust are delighted to invite you to their Research Awareness day, which is being held as part of the celebrations for International Clinical Trials Day. The event is open to all patients, carers and NHS staff who would like to find out more about research within Herefordshire. The day will showcase the achievements of researchers from the Trust and Primary Care to explore the benefits of greater involvement from patients and collaboration with healthcare professionals. NIHR Clinical Research Network: West Midlands, along with members of Trust staff, are holding an awareness stand on Tuesday 20 May 2014, 10am until 2pm at the County Hospital, main reception, in support of this year’s International Clinical Trials Day ‘It’s OK to ask’. Information will be available on research networks and how patients and members of the public can take part in research. For more information and to reserve your place, please contact Jo Sampson, phone: 01905 760 221 or email: joanna.sampson@worcsacute.nh.uk Page 10 relationship, establishing an effective rapport and, crucially, acknowledging the commitment shown by both practitioners and participants is the best way to achieve the mutual understanding that is needed to join the ‘research family.’ If you would like to take part in this event and organise a display stand, please contact Amanda Jones, phone: 01905 760 223 or email: amanda.jones@worcsacute.nhs.uk Readers’ Feedback What do our Readers think about Participate? The aim of Participate is to inform and enlighten health professionals, academics and other interested parties about the latest in primary care research throughout West Midlands South, giving advance warning of future research opportunities and helping study teams to reach the recruitment they need. In addition, many participants are very interested in the results of studies undertaken in previous years so we aim to offer feedback on these results on a regular basis. Every quarter over 700 copies of Participate are distributed to our readership; it reaches every GP practice and most other health centres throughout Herefordshire, Warwickshire, Worcestershire and Coventry, as well as academic institutions and study teams. We asked our readers what they thought and share a selection of their thoughts below: “This is probably the best newsletter we receive! I actually read it!” “Great newsletter I would love to be on distribution please and can you send me a hard copy too if you have a few spare I would like to share as a good example.” “Your Newsletter is very informative and easy to read. It clearly highlights the points of interest and contents on the front page.” “One of the key features of PARTICIPATE is that it is available in hard copy. This makes it more user-friendly and it serves as an excellent tool for group discussions with the public. It is very motivating for newcomers who want to learn more about PCRN’s activities and who may actively want to participate in new studies.” “Thank you so much for sending us the hard copies of the newsletter ‘PARTICIPATE’. The layout of the article looks GREAT. I would really appreciate if you can send me the e-link to access the newsletter. Is it possible for you to send us some more hard copies as well please?” Image courtesy of Gualberto107 at FreeDigitalPhotos.net E-Participate and Participate on-Line In summer 2013 we launched our electronic version of Participate, initially to 420 recipients. So far, results have been very positive, showing a consistent level of interest running above what is expected as industry average. Readership of E-Participate has engendered a higher level of awareness of our primary care website where more detailed information is available. For further information, to browse current and past editions of Participate, please go to our website at: www.warwick.ac.uk/go/PCRN If you would like more information about primary care activity within the West Midlands South area, please visit our website: www2.warwick.ac.uk/fac/med/research/hsri/primary_care E-Participate Readership Levels 25% 20% 15% 10% 5% 0% Industry Avg. Summer 2013 Autumn 2013 Winter 2013 Would you like to join the CRN: West Midlands team? Opportunities are always arising for research facilitators and research nurses to join our enthusiastic and friendly team. CRN: West Midlands is part of the National Institute of Health Research Clinical Research Network, funded by the Department of Health. We ensure patients and healthcare professionals are able to participate in high quality primary care research across Herefordshire,Worcestershire, Warwickshire and Coventry. For further information on the roles available please contact Pauline Darbyshire, PCRN WM-S research nurse, email: p.darbyshire@warwick.ac.uk or Sue Elwell, PCRN WM-S research manager, email: s.elwell@warwick.ac.uk Page 11 CLRN / Governance An Introduction to Patient and Public Involvement in Research A workshop to support people who would like to find out more about local research and how to get involved – free to all patients and public members and NHS research staff across the West Midlands (South) region which covers Coventry, Warwickshire, Herefordshire and Worcestershire Thursday 22nd May 2014 Date: Time: 10.00am – 12.45pm Venue:George Eliot Teaching & Education Centre, George Eliot Hospital CV10 8DJ Facilitator:Mohammed Shaikh, PPI Officer Aims • Increase knowledge on patient and public involvement in the NHS • Increase knowledge on patient and public involvement in clinical research • Understand the process of getting involved in clinical research • Understand the contribution patients and public members can offer to clinical research and the CLRN Expected Learning Outcomes • Awareness on the research role and priority within the NHS • Awareness of different research networks • Identify the various methods of research • Recognise the rationale of clinical research studies • Identify ways of getting involved in local research studies/ CLRN • Find out how to effectively contribute to research studies For further information, or to request a booking form, please contact: wmsouthclrn.academy@uhcw.nhs.uk West Midlands (South) Comprehensive Local Research Network Academy for Research Active Professionals Course Schedule: May – September 2014 A full course list and details on how to book can be found on the WM(S) CLRN website at www.crncc.nihr.ac.uk/aboutus/ccrn/wmids-south/news/Training Course Title Date Time Location Site File Management 20/05/2014 12:30-16:00 Worcester GCP Refresher 21/05/2014 13:00-16:15 Worcester Introduction to Patient Public Involvement in Research 22/05/2014 09:50-12:45 George Eliot Introduction to GCP 06/06/2014 08:45-15:45 George Eliot Introduction to Research Management & Governance 16/06/2014 09:00-12:00 George Eliot GCP Refresher 30/06/2014 13:00-16:15 University Hospital Coventry Introduction to GCP 16/07/2014 08:45-15:45 Warwick University Clinical Trials Unit GCP Refresher 03/09/2014 09:00-12:15 University Hospital Coventry Gaining Informed Consent 11/09/2014 09:30-13:00 University Hospital Coventry Commercial Trials Workshop 11/09/2014 09:30-12:30 Worcester Introduction to Research Management & Governance 22/09/2014 09:00-12:00 University Hospital Coventry Commercial Trials Workshop 25/09/2014 09:30-12:30 University Hospital Coventry Introduction to GCP 29/09/2014 08:45-15:45 Wye Valley New course dates are added on a regular basis. For further information or to be added to the circulation list, please email wmsouthclrn.academy@uhcw.nhs.uk Division of Health Sciences Warwick Medical School University of Warwick Coventry, CV4 7AL Page 12 Tel: 02476 575767 Email: j.oskiera@warwick.ac.uk Web: www.crn.nihr.ac.uk/wmidlands www.warwick.ac.uk/go/PCRN