“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.
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 could not 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 the data, and are involved in processing, they are called data processors. 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 and only data controller for the data that is disseminated for the purposes of looking at ‘what works and at what cost?’ UCL will determine the purposes for which and the manner in which any personal data are to be processed. 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:
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 3269
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.
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
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.
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.
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.
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.
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.
Patient / Service user / Carer with influence Award
Sophia Kotzamanis – a parent representative for BUDS [Better Use of data to improve parent satisfaction), an initiative aiming to improve the experience parents have when their baby is admitted to a neonatal unit.
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.
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.
‘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)
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…………………..
NIHR CLAHRC North Thames conducts ground-breaking research that directly impacts the health of patients with long term conditions and the health of the public.