The Power of Involving Patients and the Public

“Patient and Public Involvement (PPI) can often be something bolted on to research in a way that fits with the existing research plan. This makes research much easier to press ahead with, as the conflicting and changing opinions of the public do not need to change the planned course of progression.  Unusual then, that PPI was considered to be an integral part of Power Up, and awarded time, resources, and influence. The young people who were involved have made great use of this newfound power. The Power Up app is fantastically tailored to the target audience because the target audience made it. The novel approach to PPI used in the project was important in hearing and using the young people’s views…I would urge future researchers to consider PPI as a vital part of research proceedings, as it has been in Power Up.”  Project worker, Power Up

The Power Up study, supported by NIHR CLAHRC North Thames, has made the involvement of young people an integral part of the research process in work to develop an app to support shared decision-making in mental health. Power Up is a four-year research project to develop an app for young people to use from their first assessment with Child and Adolescent Mental Health Services (CAMHS) to empower them to be actively involved in decision-making.

 

 

Young people were active participants in taking the concept of a shared decision-making tool through design, prototype, and testing through three different types of involvement: governance of the project; needs and environment analysis; and detailed input for the development of the intervention.

PPI was embedded into the project model from the outset, to be iterative and cyclical informing the development and direction of the digital tool at each stage. Involving service users resulted in the identification and implementation of multiple changes to the app, both conceptual and tangible. Several challenges associated with PPI were also encountered, warranting future research and discussion.

 

The team has published their involvement experience in a paper published in special themed edition of the Journal of Health Design entitled Patients as co-designers to improve the quality of care

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Edridge C L, Edbrooke-Childs J, Martin K, Delane L, Averill P, Feltham A, Rees J, Jeremy G, Chapman L, Craven M P, Wolpert M.

Power Up: Patient and public involvement in developing a shared decision-making app for mental health.
JHD. 2018;3(1):63–74. https://doi.org/10.21853/JHD.2018.40

 

 

 

Using patient information

Privacy Notice

Using patient information

Getting It Right First Time (GIRFT) is a national programme designed to improve care for patients within the NHS, by reducing unwarranted variations. Our evaluation of the NHS Getting it Right First Time programme couldn’t happen without access to patients’ data and this will play a vital role in our ability to get a picture of how the programme is working and the difference it is making to patient care. We want to be clear about how your data is stored, used and protected in our research. One aspect of this study looks at ‘what works and at what cost?’

We are trying to look at whether the Getting it Right First Time programme in orthopaedic surgery has reduced variations in orthopaedic practice and costs, and improved outcomes for patients. To do this, we are requesting confidential patient data for a group of patients who have undergone elective orthopaedic surgery between 1st April 2009 and 31st March 2018.

The data we would like to use include Hospital Episode Statistics (HES), a database containing details of all admissions to NHS hospitals in England, which is collected so that hospitals can be paid for the care they deliver. We would also like to include Patient Reported Outcome Measures (PROMs) for patients who have had hip or knee replacements. NHS patients who have had these procedures have been invited to fill in Patient Reported Outcome Measures (PROMs) questionnaires as part of the Department of Health’s PROMs programme. The NHS asks patients about their health and quality of life before they have their operation, and about their health and the effectiveness of the operation afterwards at six months. These data can also be processed and used for other purposes, such as research and planning health services. We would also like to use data from the National Joint Registry (NJR). The NJR was set up by the Department of Health to collect information on all hip, knee, ankle, elbow and shoulder replacement operations across the NHS, to make sure joint replacement implants were working and to also ensure the different types of surgery for these operations were safe and effective.

Secure storage and processing of patient information

This study has already received research ethics approval – a process designed to make sure researchers’ can benefit from accessing data while minimising risk of any harm to patients –  and Health Research Authority Confidential Advisory Group Section 2.51 approvals. The legal basis for processing are covered under Article 6 (1)(e) and Article 9 (2)(j).

Personal data of patients – including NHS number, date of birth, sex, postcode and the study ID will only be securely transferred between two organisations – Northgate Public Services (who control NJR data) and NHS Digital (who control HES and PROMs data). This is considered to be personal data according to European data protection rules – the General Data Protection Regulation (or GDPR). As these two organisations currently hold and control the data, and are involved in processing, they are called data controllers. The purpose of sending this personal data between the two organisations is so NHS Digital can link these data together for the same patients, to provide more accurate and complete information for researchers who can track a patient’s journey through the NHS system. However, researchers will not have access to any personal identifiable data, and will not be able to identify patients, using the information that they are given by the two organisations (Northgate Public Services and NHS Digital).

Both organisations will securely transfer pseudonymised data to researchers at UCL. Pseudonymisation means the most identifying fields within a database are replaced with artificial identifiers, or pseudonyms so patient information can be processed without researchers being able to identify patients. This means that UCL will be the final data controller for the data that is disseminated for the purposes of looking at ‘what works and at what cost?’ All pseudonymised patient information will be stored on a secure network that is password-protected, and can only be accessed by those with specialised training and access for the duration of the study.

The data will be stored by researchers at UCL until 2021 for analysis and dissemination purposes, and thereafter will be securely destroyed.

UCL Data Protection:

UCL is required by law to comply with data protection legislation. The UK’s regulator for the legislation is the Information Commissioner’s Office.  It is the commitment of the university to ensure that every current employee and registered student complies with this Act to ensure the confidentiality of any personal data held by UCL, in whatever medium. This Act came into force on 25 May 2018.

UCL processes the personal data of living individuals such as its staff, students, contractors, research subjects and customers. UCL has a data protection policy as a commitment to the safeguarding of personal data processed by its staff and students, and to ensure compliance with the legislation. It is the duty of data controllers such as UCL to comply with the data protection principles with respect to personal data.  This policy describes how UCL will discharge its duties in order to ensure continuing compliance with the Act in general and the data protection principles and rights of data subjects in particular.

Data Protection Officer Contact details:

Chloe Levelle

Research Department Administrator

PA to Professor Rosalind Raine and Professor Naomi Fulop

Department of Applied Health Research, UCL

Visiting Address: 1-19 Torrington Place, London WC1E 7HB, Rm 112

Postal Address: UCL, Gower Street, London WC1E 6BT

Tel: 020 3108 3256

E-mail: c.levelle@ucl.ac.uk

 

Opting-out

We are happy to discuss your rights to protect your data, and how exactly it will be used in our research. If you would like further information about the use of your data in this research study, or would like to lodge a complaint to a supervisory authority – please contact us on the details given below. If you would like to request that your confidential patient information is not included in this study, please aim to contact us between 1st May – 24th August 2018 to discuss.

Contact details:

Dr Sarah Jasim

NIHR CLAHRC North Thames

Department of Applied Health Research

University College London

1-19 Torrington Place

London WC1E 7HB

Tel: 020 3105 3233

E-mail: clahrc.girft-evaluation@ucl.ac.uk

How will this be operated?

To ensure feasible and practical methods of opt-out, we will offer patients a 1-month window to be able to contact us. For those patients who require further information about how their confidential patient information will be used, we will provide this via e-mail or arrange telephone conversations to provide further information and reassurance. For those patients who would like their data to be removed from the cohort included in our research – we will ask for the minimum variables necessary to first correctly identify patients, and then to enable NHS Digital to remove these specific patients for the linkable NJR and HES-PROMs dataset they are preparing for us. We will then provide these variables securely in one spreadsheet to NHS Digital, so they can remove these patient records from the dataset they will send us. The spreadsheet containing this patient information will be deleted as soon as this process is complete. As patients are providing us with this sensitive information for the purposes of the opt-out mechanism, we will also explain that this will be shared with NHS Digital for them to be able to remove their records from the dataset.

Brian Turley Awards – winners and runners up announced

The inaugural London-wide Brian Turley Patient and Carer Involvement Awards took place at the NIHR CLAHRC North West London Spring Collaborative Learning Event on the 26th April 2018. The awards, presented by Simon Denegri (below centre), National Director for Patients and Public in Health Research, celebrate and promote patient and carer involvement in healthcare research and improvement.

The Awards were created in 2017 by NIHR CLAHRC Northwest London in memory of Brian Turley (below) a dedicated and committed patient advocate and disability rights campaigner who worked closely on a project that developed the ‘My Medication Passport’. The awards aim to sustain Brian’s values and commitment to partnerships between professionals and patients, carers and the public in research and service improvement work across the capital.

There were fifteen entries from CLAHRC-funded and supported work across the capital, and feedback on the quality of entries from judges and those interested in the results was positive –

“Once again, it is been a pleasure to read about all of the projects and my sense is the quality of the applications overall is even better than last year which is heartening. Lots of useful tips and the common theme seems to be, we should have started involving patients and carers earlier. Very useful!”

Brian Turley Award Judge Jocelyn Cornwell, Director Point of Care Foundation

“It was an honour for me to be involved in this way. I found the detail of the submissions very interesting and informative. It was reassuring to see so much good work being done”

Brian Turley Award Judge Iain Baxter, Service User

“The nominations were varied and interesting projects, the inclusion of different stakeholders was very good…. As a first-time judge I felt that this was an opportunity to learn and develop a new skill”

Brian Turley Award Judge Charity Gondwe, Carer

The winners were awarded with the opportunity to work with graphic artist Sandra Howgate to prepare a visual representation of their work to promote and share their story with others.

The winners

Patient / Service user / Carer with influence Award

Sophia Kotzamanis – a parent representative for BUDS [Better Use of data to improve parent satisfaction), an Chelsea & Westminster Hospital initiative  to improve the experience parents have when their baby is admitted to a neonatal unit. Sophia has also just been awarded a place on the NIHR CLAHRC NWL Improvement Leader Fellowship.

See how Sophia worked with artist Sandra Howgate to capture her work

Team working with patients, service users, carers, families and communities Award

St Mark’s Hospital Patient-Centred Inflammatory Bowel Disease (IBD) Care Model at London Northwest Healthcare NHS Trust – The team involved patients and the public in a programme to improve outpatient monitoring for patients with Inflammatory Bowel Disease (IBD) by addressing the mismatch between ‘need’ and ‘access’ to services.

You can see how the team worked with artist Sandra Howgate here

Early Career Researcher/PhD student/Service User Researcher/ Fellow Award

Stuart Green, Public Health Research Fellow based at Imperial College London – Stuart was an integral part of a quality improvement initiative within a mental health trust which aimed to improve cardiometabolic screening of patients through the introduction of a comprehensive physical health assessment.

See the results of Stuart’s work with Sandra Howgate here

Runners up for the awards were

Team working with patients, service users, carers, families and communities Award

The Alcohol research team at CLAHRC South LondonTackling the stigma of alcoholism

Early Career Researcher/PhD student/Service User Researcher/ Fellow Award) 

Physio at Homerton University Hospital NHS Foundation Trust Emma Dunphy – for designing a website for people recovering from knee surgery

Patient / Service user / Carer with influence Award 

Robin Lomas who worked with UCL researchers to co-investigate the – Impact of Welfare advice in GP practices

Robin Lomas receives her award from Simon Denegri

Each CLAHRC convened a panel of judges including senior researchers, early career researchers and members of the public and patients to consider the nominations and supporting evidence provided by entrants. In all cases they were impressed by the sheer variety of work in research and service improvement going on across the three London CLAHRCs, and the uniformly high standard of entries.

“Seeing experience and involvement embraced and championed is so fantastic. Working in this way is the future of healthcare; we need to embrace partnership working. Patients are part of the solution”

Brian Turley Award Judge Ellie Wharton, Project Manager

“As a newcomer to CLAHRC, coming from a social science research context, it has been an interesting and illuminating experience to be a judge for the Brian Turley Awards”

Brian Turley Award Judge Sam Miles, Researcher

We have shared detailed feedback with all entrants and strongly encouraged them to seek channels to share their involvements stories through newsletters, websites and in journals.

My health in school website up and running

CLAHRC researchers based at Queen Mary University working to positively transform the health of young people have launched the My health in school initiative and website.

‘My Health in School’ aims to support young people’s health via school-based projects.

The My health in school team (below) also includes researchers and communications experts from Queen Mary University of London, and will initially focus will on asthma in young people aged 11-13, building on CLAHRC research and engagement with young people.

Previous collaborations with pupils, teachers and parents has spawned a number of innovations to engage and educate young people living with asthma and their peers. Outputs already developed include board and computer games, a drama being delivered in a number of schools and a short film.

The team is working with Professor Jonathan Grigg, who leads several studies about asthma and lung health in children and young people.

As well as support from NIHR CLAHRC North Thames other key collaborators, include:

  • Centre of the Cell
  • GLYPT (Greenwich and Lewisham Young People’s Theatre)
  • Healthy London Partnership
  • Asthma UK Centre for Applied Research

The project is recruiting secondary schools across London – schools that are interested are encouraged to get in touch with the team – find out more about what being involved means here.

 

 

Why has the US opioid crisis not spread to the UK?

The misuse of and addiction to opioids, including prescription pain relievers, heroin, and synthetic opioids such as fentanyl, has been labelled “a serious national crisis” in the US affecting public health as well as social and economic welfare. The US opioid epidemic has yet to cross the Atlantic to the United Kingdom. But why has opioid use reached crisis point in the US but not in the UK?

In a blog for the London School of Economics US Centre Senior Physiotherapist and CLAHRC HEE NCEL Fellow Diarmuid Denneny and CLAHRC Academy Teaching Fellow Silvie Cooper discuss the roots of the US crisis, and the different culture of pain management in the UK which may explain why we have not experienced the same devastating consequences…………………..

 

The Impact of Delayed Discharge

The impact of delayed discharge—defined as ‘the period of continued hospital stay after a patient is deemed medically fit to leave hospital but is unable to do so for non-medical reasons’— is an important problem for health-care providers internationally. Costs to the National Health Service (NHS) in England associated with delayed discharge are approximately £100m per year.

Beyond the financial burden this places on a hard-pressed NHS and other services, there are real implications for inpatients’ health and safety as well as the stress levels of staff and different staff groups involved in the process.

Newly published CLAHRC research – summarised in our latest BITE – assesses the impact and experiences of delayed discharge at multiple levels, from the perspective of patients, health professionals and hospitals; and associated costs of delay.

Read the full paper

Rojas-García A, Turner S, Pizzo E, Hudson E, Thomas J, Raine R.
Impact and experiences of delayed discharge: A mixed-studies systematic review.
Health expectations : an international journal of public participation in health care and health policy. 2017. DOI: 10.1111/hex.12619

Two PhD studentships jointly funded by CLAHRC and the School for Public Health Research

Two National Institute for Health Research funded PhD studentships available

The National Institute of Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames and the NIHR School for Public Health Research (SPHR) based at UCL invite applications for two jointly-funded 3-year PhD studentships at UCL to begin September 2018. Supervisors are drawn from across both the NIHR CLAHRC North Thames and NIHR SPHR. PhD projects align with the following NIHR CLAHRC North Thames and NIHR SPHR themes:

  • Children and Young People
  • Public Mental Health
  • Inequalities

The benefit of this collaborative initiative include joint funding from two high profile NIHR research collaborations, which facilitates the opportunity for unparalleled access to leading applied and public health experts, supervisors who are leaders in their field, channels for dissemination of research and participation in bespoke training and a strong network and community of graduate students and researchers. From the four topics outlined below, two will be funded through these joint studentships.

PhD Research Topics

  1. Integrated legal advice and health services

Supervised by Prof Rosalind Raine (NIHR CLAHRC North Thames, NIHR SPHR, UCL), Prof Dame Hazel Genn (UCL Centre for Access to Justice) and Dr Charlotte Woodhead (NIHR CLAHRC North Thames, NIHR SPHR, UCL)

  1. Exploring the value of linked health and council data to examine associations between adverse childhood experiences and its consequences using linked population and health datasets

Supervisory panel includes Dr Jessica Sheringham (NIHR CLAHRC North Thames, UCL), Dr Manuel Gomes (UCL) and Dr Sarah Dougan (London Borough of Islington)

  1. Exploring the value of linked health and council data to examine the clustering of multimorbidity and associated unplanned service use

Supervisory panel includes Dr Jessica Sheringham (NIHR CLAHRC North Thames, UCL), Dr Manuel Gomes (UCL) and Dr Sarah Dougan (London Borough of Islington)

  1. Closing the gap in adverse physical health outcomes for people with poor mental health: exploring the role of healthcare provision and care pathways

Supervised by Dr Kate Walters (NIHR SPHR, UCL) and Prof David Osborn (NIHR SPHR, UCL)

Further details of all topics and methodological expertise or experience required can be found here: PhD Studentships – CLAHRC SPHR Full Description 2018 

Eligibility

Candidates should hold a Master’s qualification (or complete their Master’s by September 2018) in an appropriate discipline and have a minimum of a 2:1 or equivalent in their first degree. Applicants should preferably have knowledge of the UK health and care system. All applicants are required to have excellent written and verbal communication skills. They should also be willing to work collaboratively in multi-disciplinary and multi-professional teams.

Due to funding restrictions applicants must be UK/EU nationals. Please refer to UK Council for International Student Affairs (UKCISA) for details of these criteria.

How to apply

Your application should consist of a CV, contact details of two academic referees, and a personal statement (1,000 words maximum) describing your suitability for the proposed project(s) including how your research experience, skills and interests relate to the NIHR CLAHRC North Thames and NIHR SPHR project(s). In your application, please indicate which project(s) you wish to be considered for.

Please send your application or queries about projects to Dr Silvie Cooper, NIHR CLAHRC North Thames Academy Teaching Fellow (silvie.cooper@ucl.ac.uk).

Closing date for applications: 17.00, 15 May 2018

Interviews: 25 May 2018

PhD start date: 01 September 2018 (or earlier if desired)

Duration: 3 years, full time

Stipend:  £19,158

 

Results of Brian Turley Patient and Carer Involvement Awards announced

The votes are cast and the results are in the winners of the inaugural London wide Brian Turley Patient and Carer Involvement Awards have been selected!

The Awards were created in memory of Brian Turley (pictured below) , a dedicated and committed patient advocate and disability rights campaigner who worked closely with our colleagues at NIHR CLAHRC North West London. The awards aim to sustain Brian’s values and commitment to partnerships between professionals and patients, carers and the public in research and service improvement work across the Capital.

All candidates have been informed of the results.

Winners will be officially announced on April 26th at the NIHR CLAHRC NWL Spring Learning Event at the Congress Centre in Central London.

We look forward to the presentation of the Awards by Simon Denegri, National Director for Patients and Public in Health Research.

 

Visit http://clahrc-northwestlondon.nihr.ac.uk/ to register for this free event.

Our thanks to researchers, NHS and Public Health staff and of course patients, carers and users of services who took the time to put together nominations and entries,

We also recognise the work of judges from each CLAHRC who took the time to consider each award carefully, and provide detailed and constructive feedback for entrants.

 

CLAHRC Director Prof Rosalind Raine starts work with Joint Lancet/LSE Commision on the future of the NHS

The future of the NHS is a massive issue and always at the top of the public agenda.

While the Service is the topic of fierce debate at election times, and is often used as a political football to criticise or discredit opponents, the need for a longer-term more considered view is vital to help ensure public debate is better-informed.

In this spirit the Lancet has launched a new joint Commision with the London School of Economics and Political Science on the future of the NHS. The Commission will examine how well placed the NHS is to deliver high-quality care free at the point of need in light of the massive demographic and political changes that have occured since its launch in 1948.

CLAHRC North Thames Director Professor Rosalind Raine (below) is one of the prominent thinkers recruited to be part of the Commision.

The Service’s 70th anniversary provides a timely opportunity to review how much the NHS can still fulfil its aspiration, set out in the 1942 Beveridge Report  to be “a national health service for prevention and for cure of disease and disability” that “will ensure that for every citizen there is available whatever medical treatment he requires, in whatever form he requires”.

Over the next 18-month period, Professor Raine will join commissioners from a wide range of disciplines across England, Scotland, Wales and Northern Ireland to focus on the pertinent challenges facing the NHS, culminating in the release of a report containing a series of policy recommendations in 2019.

External organisations can submit written evidence  to the Commission on their perspectives regarding the biggest challenges facing the NHS.

An opinion piece in the Lancet marks the start of the Commission’s work.

The future of the NHS: no longer the envy of the world?

Mossialos, Elias et al.

The Lancet , Volume 391 , Issue 10125 , 1001 – 1003

DOI: https://doi.org/10.1016/S0140-6736(18)30574-9

Improving NHS orthopedic care – your views and experience needed

There are big variations in care for people receiving orthopedic services in the NHS –  orthopedics covers conditions involving the musculoskeletal system including hip and knee replacement surgery. We are evaluating the Getting it Right First Time programme – or GIRFT – which aims to improve services and make sure people get more consistent care across the whole NHS.

Part of our evaluation involves asking two sets of people –

i) patients over 60 who have had orthopaedic surgery in the last two years
and
ii) people over 60 

about their views on orthopaedic surgery and improving outcomes.

We’re running focus groups in April and May at the UCL Farr Institute

UCL Farr Institute, 222 Euston Road, London, NW1 2DA

i) People who have had a hip or knee replacement in a NHS hospital within the last two years Aged over 60

ii) People over 60

Contacts to register your interest are below –

Dr Jean Ledger: j.ledger@ucl.ac.uk or 020 7679 2000 / x53274
Dr Sarah Jasim: sarah.jasim@ucl.ac.uk or 020 7679 2000 / x53233