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Advanced heart failure priority setting partnership OUImages / Nasir Hamid

 We need your help!

We are forming a partnership involving patients, carers, charities, healthcare professionals and researchers to find out what is important in heart failure research for the most important people - those affected by the condition. Help us by completing our survey, promoting this research and sharing the results.

The importance of involving those directly affected by a condition in identifying research priorities to ensure the findings are relevant is increasingly being recognised. The aim of this project is determine a 'top ten' list of research priorities for patients with advanced heart failure.

The Universities of Oxford, Bristol and Cambridge are working together to establish a Priority Setting Partnership (PSP) following the methods set out by the James Lind Alliance – a charitable organisation committed to ensuring those most touched by a condition are involved in prioritising research.

The steering group includes those affected by advanced heart failure including patients, carers and clinicians involved directly in heart failure care. An initial online survey will determine what the priorities for advanced heart failure research should be. The members of the steering group will promote the survey through their ‘wider partner networks’ which include patient groups, healthcare clinics and through relevant websites such as heart failure charities and local NHS trusts.

The survey results will be checked against what is already known about heart failure treatment to see where there are gaps in knowledge. Priorities will then be sorted to generate a short list for discussion at a final workshop where a ‘Top 10’ priority list will be agreed. These priorities will be used by researchers to apply for funding to undertake projects which could improve care for patients with advanced heart failure in the future.

PATIENT AND CARER REPRESENTATIVES

 Deb Smith

Jennifer Bostock

My interest in heart failure comes from caring for my mother who has the condition and my father who also had it before he died. I have seen the way that the condition has affected not just my mother’s health, but her social and domestic life and I am keen to help set research priorities to try and help some of these difficulties. I have worked on a JLA for infection research which is currently ongoing and work in PPI to try and stimulate involvement at the earliest stages of research such as via the JLA process. I have been working in Research Ethics & Patient/Public Involvement for over 10 years, as a lead reviewer & Vice Chair for an NHS (MCA) REC, visiting academic/lecturer at the medical school at King’s College & as a trainer working for organisations such as the mental health research network & the HRA. Sitting as an Ethicist on the Marie Stopes International Ethics Committee & Ethics Lead to RDS London.  I am also a Lay member of the Independent Funding Panels at NHS England and a local CCG & funding panel member at the NIHR & Cancer Research UK. I am a former Wellcome Trust Biomedical Ethics Prize Scholar & winner of the MHRN Award for ‘Outstanding contribution to psychiatry research’.  I am a former CQC MHA Commissioner; NICE GDG; Topic Expert & Quality Standards Panel member; NHS Patient involvement lead; GP Performance and RCGP Quality Assessor. Lay member on the National Clinical Audit & Confidential Enquries Advisory Board & HQIP.  My current Board memberships include the International Strategic Advisory Board at Cambridge University (pub health), School of Pub Health (NIHR) & Quality Outcomes Research Unit. I have written for the specialist, NHS & academic press and has co-authored book chapters & I am a lay peer reviewer for the DOH, the NIHR & Health Expectations. I chair a number of groups including: NHS MHAct appeals panel; NHS IFR & PPI Reference Group & I am the Lay Chair of the Apollo Expert Advisory Group at QMUL & the UsPex Study Lay Panel at the University of Oxford.

Deb Smith

John Burden 

I am 70 years old and was diagnosed with heart disease in 2000. My previous career background is mostly in education. I taught Geography in a secondary school for 10 years before joining the Herts CC Advisory Service where I eventually became an education adviser and inspector. I retired early for health reasons but spent a further 10 years as a part time education tutor at the Univ of Hertfordshire. I have a complicated cardiac history including a diagnosis of Heart Failure in 2013 but this is currently well controlled by medication. Despite this I live an active life in retirement.

Deb Smith

DANIEL SMITH 

Patient and Carer Representative

I am an electrician from Nottingham. I was diagnosed with heart failure in 2012. Before diagnosis I was fit and healthy and although my illness was caused by a virus, I don't remember being sick that year. I now do a fair amount of work for the heart failure charity, Pumping Marvellous. My passion lies in helping newly diagnosed patients as I know this is the most confusing and difficult time for them and their families. 

Deb Smith

Deb SMith

Patient and Carer Representative

I have cared for family members with serious heart problems. I live in The Midlands and have a lot of experience in helping with Patient & Public Involvement and a wide range of research experience, networks and knowledge. 

Ayath Ullah

 Ayath ullah

Patient and Carer Representative

I currently work for HM Government and have had a number of roles in policy, investigations, tax and operational delivery. I was previously at the Bank of England which is the central bank of the United Kingdom- sometimes known as the 'Old Lady' of Threadneedle Street.

I am an avid networker and love connecting with new people. Also I was previously an adviser to central Government. I was a pioneering member of a Panel, setup by the Department for Children, Schools and Families (now known as Department for Education) & sponsored by the Learning and Skills Improvement Service (LSIS), to advise government and other FE sector organisations on how to improve further education policy in England.

I am Chairman at the World Youth Organization and also sit on the trustee boards of NOMAD and BigVoice London.

I was appointed by the Home Secretary and the Lord Chancellor to sit on the Independent Monitoring Board at London Heathrow Airport to monitor the welfare and treatment of those held in custody in the UK under a UN human rights treaty.

I have previously worked with the Farr Institute of Health Informatics to critique research methodologies used for the National Influenza Survey this involved reading the lead researchers large study materials, followed by watching a presentation then asking relevant questions around data storage, consent and the methods employed to make sure the work had a diverse set of participants. I also serve on the CLAHRC North Thames patient user group where I work with academics on making sure that their research documents are written in plain English and jargon free to make it accessible to the widest range of audiences. I also have experience in undertaking interviews with research participants and my special skills are in working with vulnerable and hard to reach groups such as BME communities, children and those with mental health needs.

I have several years’ experience of starting new peer led user/patient support groups from scratch. This has required me to understand and apply the duties and liabilities of my position and create frameworks/policies for the organisations to grow such as good governance and procurement.

I serve on the patient panel for The National Institute for Health Research (NIHR) Imperial Patient Safety Translational Research Centre (PSTRC) which scrutinises research activity to make sure each project has included appropriate PPIE plans with appropriate lay partners.

CLINICAL REPRESENTATIVES

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MARY BRICE

Heart Failure Nurse Specialist

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KIT BYATT

Consultant Geriatrician

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AMY GADOUD

Consultant in Palliative Medicine

I am a consultant in palliative medicine at Cumbria Partnership NHS Foundation trust and works across community, hospice and hospital settings. I have funded research time as an honorary senior lecturer at the International Observatory on End of Life Care, Lancaster University. My research interest is palliative care for people with heart failure.

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ALYSON HUNTLEY

Research Fellow

I am a Research Fellow in the Centre of Academic Primary Care at the University of Bristol. I am an evidence synthesis researcher with literature searching and systematic review skills and have a specific interest in older person’s health. I am working as the information specialist on this JLA project.

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RACHEL JOHNSON

GP and Health Services Researcher

I am a GP, a health services researcher, and one of the team who has set up this priority setting partnership.  My research focuses on heart problems (including several looking at heart failure) and on high blood pressure. 

NICK JONES 

NIHR Academic Clinical Fellow in General Practice

I am a Academic Clinical Fellow training in General Practice. My main research interests are in cardiovascular medicine including atrial fibrillation and heart failure. I chose a career in General Practice because I love the variety of the work and opportunities: I am involved in teaching as an Oxford University Medical Education Fellow and have a Masters in Clinical Education from Newcastle University. I have also previously worked internationally in Australia and South Africa as well as experiencing pre-hospital work mountaineering in Nepal and volunteering with the Royal National Lifeboat Institution.

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RICHARD LEHMAN

Retired GP and Professor of the Shared Understanding of Medicine

I am a retired GP whose interest in heart failure dates back 30 years when my father had the condition. I have conducted research in the area and put together the first book on the subject of heart failure and palliative care. I am currently Professor of the Shared Understanding of Medicine at the University of Birmingham.

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SARA MCKELVIE

GP and Clinical Researcher

I am a GP and researcher at the Emergency Multidisciplinary Units (EMU) within Oxford Health NHS Foundation Trust, with funding from NIHR CLAHRC Oxford. These are community based day units that use a holistic approach to assess and individually tailor healthcare for older adults with urgent medical problems without needing an overnight stay in an acute hospital bed.    

I am currently the chief investigator for a qualitative study exploring the intellectual processes involved in clinical decision making in this ambulatory care setting. My supervisors are Dr Daniel Lasserson (Birmingham), Dr Joanne Reeve (Hull & York) and Dr Margaret Glogowska (Oxford). This study aims to understand the training needs of staff working in ambulatory care as it is critically important for patient safety that clinicians are properly trained for this complex work.   

Prior to work with the CLAHRC, I completed a Leadership and Education Fellowship at the Oxford School of General Practice after finishing vocational GP training scheme in 2015. I work clinically as a GP associate in Oxfordshire, with an interest in geriatric medicine.

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BEV MUMFORD

Lead Nurse and Community Heart Failure Service Operational Manager

I am the lead nurse and operational management for the Community Heart Failure Service in Bristol Community Health. I set up and have led the development of the service over the past 13 years, working closely with key stakeholders. 

I have an extensive cardiology nursing background in both the acute and community setting. 

I am currently a member of the Bristol, North Somerset and South Gloucestershire Heart failure working group and member of the British Heart Failure Society. 

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CLARE TAYLOR 

GP and NIHR Academic Clinical Lecturer

Heart failure is my main research interest. My doctoral work examined the clinical pathway for patients diagnosed with heart failure in primary care, particularly the epidemiology of heart failure in the community and the patient experience of diagnosis. I am co-Principal Investigator for the REFer for EchocaRdiogram (REFER) study which examines the use of a clinical decision rule and natriuretic peptide testing in the diagnosis of heart failure in primary care. I am also part of the Echocardiographic Heart Of England Screening (ECHOES) study team. The ECHOES-X study rescreened patients from the original ECHOES cohort to determine the outcome of heart failure in a community population. Internationally, I am collaborating with the University of Sydney to examine the burden of heart failure in Australian general practice.    

My other research interest is atrial fibrillation and anticoagulation. I have used routinely collected general practice data to examine the prevalence of atrial fibrillation and management of oral anticoagulants in primary care, and been involved in a randomised controlled trial in stroke patients. I am an experienced lecturer at Masters level, GP tutor and senior clinical examiner for undergraduates and a trained mentor.

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ELEANOR WICKS

Consultant Cardiologist in Heart Failure and Inherited Cardiac Conditions and Clinical Lead for Heart Failure

I am a consultant cardiologist and am clinical lead of the heart failure and inherited cardiac conditions services in Oxford. My specialist interests are in heart failure, cardiomyopathies, multimodality imaging and inflammatory cardiomyopathies (including sarcoidosis and myocarditis) and in general medicine, advanced heart failure and transplantation. I have previously worked at Barts Heart Centre, The Heart Hospital, University College Hospitals, where I transitioned my research conducted at UCL into every day clinical practice. I hope to develop the heart failure and inherited conditions services across Oxfordshire and beyond to deliver comprehensive acquired and inherited services to those in need and to maintain and develop close links with other centres to facilitate collaborative clinical and academic research.

SUPPORT TEAM

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TOTO ANNE GRONLUND

James Lind Alliance

I am freelance consultant and have been working with the James Lind Alliance since early 2017 as an Adviser.  I am privileged to be working with the Advanced Hearth Failure JLA Priority Setting Partnership, and support several other JLA PSPs.

I have recently retired from 30 years of working in the NHS. My NHS career started with running clinical trials in cancer, then as a Hospital Medical Physicist, working in research into non-invasive diagnostics. For most of my NHS life, I have worked in ensuring that the patient voice is heard, respected and understood. More recently I worked in health informatics and health economics supporting various national projects. In the voluntary sector I have held roles as trustee, facilitator and in evaluation.

Currently I am also a section editor for the Journal of Innovation in Health Informatics, and a member of the RCGP Research Awards and Research Paper of the Year panels. I do occasional consultancy in Health Informatics, Health Economics, and communication of risk. 

Sarah Morrish

Sarah morrish

Priority Setting Partnership (PSP) Coordinator

I am Executive Assistant to Professor Richard Hobbs, Head of Department and Personal Assistant to Tanya Baldwin, Head of Administration and Finance. 

I have over 14 years experience providing high level personal support at a senior level, as well as organising events and conferences. I have previously been involved in managing a public and patient involvement panel with over 170 members for the Health Behaviours Team and I am now providing co-ordiantor support for this JLA project.

How the James Lind Alliance Process works

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STAGE 1 - ESTABLISHING THE HEart failure PARTNERSHIP

A Steering Group is formed, bringing together patients, carers, charities, healthcare professionals and research experts. The steering group agree a protocol for the project, outlining what will happen and when. They also agree on management arrangements and identify further partners to reach as wide an audience as possible. 

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STAGE 2 – YOU SHARE YOUR VIEWS

No one understands heart failure better than the people who live with the condition or their families. The Steering Group will create a survey, using the James Lind Alliance guidance, to help understand which research questions these people as well as clinicians think are important to answer. 

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STAGE 3 - DATA MANAGEMENT

The project data management group will gather up all the survey results and sort the answers into research questions and themes. We will review what existing research is already done that might be able to answer some of the questions and prioritise questions where there is a lack of evidence. 

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STAGE 4 - INTERIM PRIORITISATION

 To check we've got the right message, the research questions we've created will be sent to survey respondents and partner organisations. Respondents will be asked to rank their top 10 unanswered questions and these will be combined to create a final shortlist. 

 

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STAGE 5 - FINAL PRIORITISATION

At the end of the process we will hold a workshop for those who have taken part and partner organisations. This will be a platform to promote the agreed final list of the top ten unanswered research questions. We will share these results as widely as possible to help them guide future heart failure research. 

Working with: University of Bristol University of Cambridge
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Funded by:

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