1
Strategy for children, young people, parents and public involvement
Children, young people, parent and public involvement in the Policy
Research Unit Children and Families
Background
The NIHR Policy Research Unit for Children and Families (CPRU) is carrying out a timely, robust, relevant and accessible programme of research that will generate evidence to support the development of government policies to improve the health and wellbeing of children, young people and families.
This is a programme of work which commenced in January 2019, following the preceding CPRU at UCL, which over 7 years carried out research having a significant influence on policy and practice.
Our research will unpick the social and environmental factors that affect the health and wellbeing of children, young people and families; explore possible ways in which changes in policy might affect their health and wellbeing; and evaluate the impact of changes in policy and practice on health and wellbeing. We will have a strong focus on health inequalities and how these can be reduced.
It is imperative that we carry out our research with a considered, comprehensive
programme of children, young people, parents and public involvement (CYPPPI). We are committed to ensuring that children, young people, parents and the public are involved in the work of the CPRU, where and when it is appropriate. Involvement will be integral to all research, but the model of involvement, and individuals to involve, will depend on each project. Accessibility of our research implies not only peer reviewed publications and intelligible briefings for policy makers but also lay summaries for end-users and children, young people and carers. Our approach is in keeping with the report of the House of
Acronyms and non-plain English terms BRC Biomedical Research Centre
Cafcass Children and Family Court Advisory and Support Service CPRU Policy Research Unit Children and Families
CYPPP Children, young people, parents and the public
CYPPPI Children, young people, parent and public involvement DHSC Department of Health and Social Care
DVA Domestic violence and abuse
GOSH Great Ormond Street Hospital for Children NHS Foundation Trust HES Hospital Episodes Statistics
Maudsley South London and Maudsley Hospital NHS Foundation Trust NCB National Children’s Bureau
PCAG Parent and Carer Advisory Group PPI Public and patient involvement UCL University College London YRA Young Research Advisors
2
Commons Science and Technology Committee in October 2018 regarding the need for transparency in research.
Finally, we pledge honesty and transparency to our children, young people and parents and promise to not involve them for the sake of involvement.
Aim
Structure of CPRU
Our overall goal is to improve the availability, timeliness, quality and utility of evidence for public health and policy relevant to child and family health. To achieve this, we have organised our research programme into three research themes supported by three cross-cutting resources. This structure will facilitate integration of clinical, policy and
methodological expertise with innovative analytic tools and data access, informed by CYPPPI. This integrated approach will span longer-term research projects as well as rapid responses to urgent policy issues.
CPRU research and CYPPPI work
The research themes, cross-cutting resources, and examples of current or planned CYPPPI are detailed below.
Research themes
Theme 1. Early interventions for children and families: This theme focuses on primary prevention through universal and targeted programmes to reduce health inequalities and prevent adverse outcomes across the child and family life course.
Planned CYPPPI work: We will work with young people and co-production leads from the Headstart partnerships to develop interview schedules and, based on the
subsequent qualitative findings, develop a Young People’s Taxonomy of Help. Wewill also co-produce reports of the findings for young people by young people.
Theme 2. Vulnerable children and families: This theme focuses on secondary prevention of adverse outcomes for vulnerable children and parents presenting to health services through responses by healthcare, education and children’s social care and other agencies.
Current CYPPPI work: We are currently developing a Core Outcome Set for research on child maltreatment, adversity and domestic violence and abuse (DVA) with people who have lived experience in those areas. We have also been working with Pause, a charity that supports women who have experienced, or are at risk of, repeated pregnancies that result in children needing to be removed from their care. This has involved asking women who have been through care proceedings about their experiences, and thoughts on linking several datasets (Cafcass, Hospital Our overall aim is to conduct high-quality research to support the development of evidence-based policy to improve the health of children and families, and to develop methods and data resources to improve the quality and timeliness of evidence for policy
3
episodes statistics (HES), Maudsley service user dataset) in order to understand health needs of these women.
Theme 3. Long-term conditions and disability: This theme focuses on tertiary prevention, through interventions to minimise consequences of adverse mental and physical health conditions, and reduce disability and health inequalities.
Current CYPPPI work: Last year we undertook some involvement with the NCB and PenARC to understand what matters to CYP and parents about multimorbidity, to inform a future funding call by the DHSC. We have also attended a meeting with the NCB’s Young Research Advisors (YRAs) to discuss their views on the PPI Standards in this CYPPPI strategy. More planned work is in Appendix 1.
Cross-cutting resources
Resource 1: The Health Economics Analysis and Data resource (HEAD) will provide economic expertise and quantitative methods, including support for using administrative and cohort data resources (e.g. hospital, primary care, education and social care for
England). Outputs will include new methods, data sets, economic models and algorithms to support policy evaluation, low-cost intervention studies, and monitoring of services.
Current CYPPPI work: CPRU researchers have been training parents and lay people in using administrative data and HES for research. Our PI for the resource, Morris, will deliver a learning session on understanding health economics for the NCB’s YRAs this spring.
Resource 2. The children, young people, parent and public involvement (CYPPPI) will be integrated across the entire research programme and will provide input into all stages of projects, from early phase question development through to project design and
dissemination of findings. We will involve multiple groups and individuals and reach out to involve children, young people and parents across England, including seldom-heard voices. Resource 3. The responsive facility will meet regularly with DHSC colleagues to identify policy research needs, including using horizon scanning. The facility will develop
researchable questions, conduct rapid scoping or systematic reviews or data analyses, and develop and commission projects. This resource is not highly amenable to CYPPPI as it will typically involve very short timelines, although there may be opportunity for involvement with research question prioritisation, developing projects, and plain-English outputs. Going the extra mile
The Going the Extra Mile report provides useful direction for strategy development, and subsequent planning of CYPPPI activities. From attending the meeting the CCF hosted in March 2019, we understand that the NIHR Strategy 2015-25 articulates “Going the extra mile” as including:
4
Better impact – reach (including improved diversity and ‘hard to reach groups – see our experience above), relevant, refinement, relationships
Regional and local collaboration Co-production (see below) Maintaining a global reputation
While our PRU accepts and intends to work towards all these recommendations, certain recommendations in the report, in particular, stand out as relevant to involving children and families. Recommendation 2, Culture, is addressed separately in the UK Public Involvement Standards section.
Recommendation 5: Continuous improvement
Across our themes and studies, we are committed to continuously reflecting on, and improving, our CYPPPI. We will document all PPI activities as they take place (Appendix 2) and reflect following all activities, on areas for improvement and also what went well.
Recommendation 6: Co-production
There is a great opportunity to produce dissemination products with our CYPPP. The co-lead Erin Walker has experience of helping young people produce podcasts, attending and presenting at conferences (INVOLVE 2017, Cochrane Colloquium 2018), co-producing content for animated videos, and co-producing an infographic with adults. Young people access social media and information online, in ways that adults do not, and given our commitment to getting the findings of our research in to the hands of children and young people, it is imperative that we co-produce these outputs, targeted for some of those sites. This is also an opportunity for more creative working, which may have more of an appeal to some young people than more cerebral, cognitive involvement such as reading and writing. We need to disseminate our research to ensure that research informs policy and policy becomes practice. This is about real world implementation and impact, and children, young people and carers can help advise us on the best modes of dissemination.
Recommendation 7: Connectivity
CPRU is a collaboration of researchers across the GOS UCL Institute of Child Health, University of Bristol, Cambridge University, the Institute for Fiscal Studies, UCLPartners, and the University of East London. We have connections with researchers at the South London and the Maudsley psychiatric hospital, and other NIHR infrastructure (e.g. the BRC at Great Ormond Street Hospital, the NIHR Applied Research Collaboration South West Peninsula). Therefore, we are in an excellent position to work with others in child health policy and research to help us answer our overall aim.
Recommendation 10: Community
Further to our connectivity, we have excellent links with diverse other CYPPPI groups regionally and nationally. The co-lead Erin Walker has worked in CYPPPI in research for 7 years and through working on other NIHR grants, holding substantive posts at the NIHR GOSH BRC, NIHR UCLH BRC, and UCLPartners, has accessed and developed relationships with a diverse
5
range of CYPPPI groups and leads. All researchers in CPRU have extensive experience in child health research and many in clinical practice, and involving children, young people and parents as well. We have therefore amassed a diverse and inclusive public involvement community, but recognise there is always room for improvement in this area, and endeavour to challenge ourselves to include more less-seldom involved groups. Whilst lack of diversity has sometimes been a criticism of PPI and research participants in the UK, this is not our experience in London where 50% of children, young people and carers come from BAME groups.
UK Standards for Public Involvement
CPRU welcomes the updated publication of the UK Standards for Public Involvement in November 2019. These standards reflect our values around, and general ethos towards, CYPPPI. Each standard is applicable to the research undertaken in CPRU.
We believe we have addressed leadership and governance for PPI within our CPRU and that our CYPPPI approaches represent what good PPI looks like, including two-way communication and feedback with our PPI partners. Furthermore, our PPI is proportionate. As we carry out almost exclusively secondary analyses, we are not recruiting children, young people and carers as research subjects. However, we do want them to part of our research insofar as framing tractable and relevant questions at the beginning of a project and advising on interpretation and dissemination once analyses have been undertaken.
For example, in May 2019 we received a request from DHSC (Natalie Owen and Leanne Dew) to involve children and young people with multimorbidity (multiple long-term conditions, physical and/or mental), and parents (CYPP), in a discussion about experiences of multimorbidity. The work was done in collaboration with Professor Stuart Logan and PPI colleagues at the NIHR Applied Research Collaborative South West Peninsula (PenARC). This information gathered from the involvement activities is to inform a research funding call on multimorbidity generally, covering the entire life span. For the work, we held a workshop with members of various CYP groups (1 Young Research Advisor (who advises on child health policy); 1 member of FLARE, an NCB group for young people with special educational needs and disabilities; 1 member of Young NCB, a more general young person’s membership group; and 4 people from the Making Ourselves Heard network, which is the leading
national network focusing on disabled children and young people’s involvement), which was facilitated in collaboration with the NCB. The workshop explored the CYP’s experiences of multimorbidity, and what mattered to them about having multiple long-term conditions. They were asked about positive and negative elements in their experiences of accessing health, education, and/or social care services. This format was then repeated at a meeting Walker attended with the NIHR Young Persons Mental Health Advisory Group, and through the PenARC with their PenCRU, a group of parents of children with disabilities. A report was produced for the DHSC at the end of 2019, including recommendations for areas of research in to multimorbidity in CYP.
6
In November 2019 we attended a meeting with the NCB’s Young Research Advisors, to discuss our PPIE strategy, and the UK Standards for Public Involvement. This is a group that was funded and formed by the previous CPRU, and young people are trained in health policy and research. At the meeting we discussed each standard as they were updated in
November 2019, and the group were unanimous in their enthusiasm about the importance and applicability of each standard to PPIE in CPRU. One young person commented, “I thought all these standards were rules at YNCB and we had to do them when we were here”. Another young person added, “YRA follow these standards by: being open to all young people; everyone’s opinions are valued.” All of the young people were passionate about inclusion, with one young person commenting, “I think you need to be inclusive otherwise the disabled people like that might have an opinion that other people don’t, [which would be valuable to the process/project and that only they could provide].” In a manner typical of young people, one young person added, “Free food = inclusive” which, paradoxically, is simple yet profound.
The research team at CPRU also fully support the UK Standards for Public Involvement and we are constantly seeking to embed the standards in our work, but in a manner that is proportionate to the research, applicable and logical, and that would be of mutual benefit to the research and the involved people. Approaches and activities we are doing to embed PPIE are:
Diversity and inclusion
CYP themselves constitute a demographic that is often not involved in health and social care research. A large part of our work is involving CYP, but also parents and members of the public where relevant.
Development of broad network of PPI groups to engage with including young people with multiple long-term conditions and carers of children with complex care needs. We have involved two young women through Pause, to understand health need and
health service use among mothers involved in care proceedings in family court. We believe very strongly in including any and all young people and parents who wish
to be involved in our research, and make efforts, through a flexible, blended approach of PPIE, to involve them (i.e. we do not expect all interested CYPP can attend face-to-face meetings).
Public involvement in governance
Following on from one parent’s expression of interest at the NCB meeting for the multimorbidity project, she will be a member of our Advisory Board, at our next meeting in 2020.
7 Working together
Our ethos towards involving CYPP is that they are experts by experiences, and therefore, have the same power in the involvement process as the CPRU research staff. We are always careful to manage expectations of CYPP in our PPIE, and thoughtful of different access needs so that we can minimise any barriers to involvement as possible. We have a clear remuneration policy, which is consistent with that of INVOLVE, to show appreciation for involvement of our CYPP.
Support and learning
We are mindful of ensuring our involved people have sufficient support and learning as they need so as to be able to be involved in our work. For example, Hardelid has delivered informal training to the NCB’s Family Research Advisory Group (FRAG) about linking administrative datasets.
Furthermore, Morris will deliver a plain-English presentation on health economics at our next meeting with the NCB Young Research Advisors.
Communications
We are also very aware that the research we do can be somewhat incomprehensible to the general public, and young people especially. As a result, we make concerted efforts to discuss our research in plain English, and will involve CYPP in producing accessible public- facing dissemination products (e.g. infographics, posters, podcasts).
Capturing and reporting on impact
For full details on CYPPPI work that has been undertaken, and the format in which we will continue to capture and report our impact, see activity log in Appendix 2.
Resources
Staff – We have committed resources to CYPPPI including a co-investigator who contributes experience in PPI in research in hospitals (Great Ormond Street Hospital, UCL Hospitals), university (UCL) and Academic Health Science Network (UCLPartners) settings. Furthermore, Co-director Stephenson has oversight of the CYPPPI, contributing experience as a
paediatrician and interfacing with national policy. There are regular lines of reporting by the Co-Director into the fortnightly management meetings and by the PPI Co-investigator into the bimonthly CPRU Exec meetings. These dialogues also allow regular and iterative monitoring and assessment by CPRU members of how CYPPPI is working.
Funding –We budgeted a total of £301,865 for the duration of the PRU. We will follow INVOLVE guidance on payment for PPIE and believe strongly in remunerating our CYPPP for involvement or engagement activity required to underpin this strategy.
Training and support
We recognise that training and support will be required for the learning and development of our CYPPP, especially given most of our research is performed on large administrative datasets, therefore the research could be more difficult to understand. All of our
face-to-8
face sessions with the YRAs, and other PPI groups, involve some training. Our view is that we need to give as much, and no more, information to our CYPPP in order that they are able to think critically about the involvement activity(ies). We also plan proactively to include teaching at meetings with the YRAs, for example how co-investigator Morris will teach a lesson on health economics to the group this spring.
Collaborations and groups we work with
Having the expertise and reach that we do, we are connected to many relevant PPIE groups, some of which we are currently working with, and some of which we plan to during the course of CPRU. These are:
Anna Freud Centre
The Social Care Institute of Excellence SLaM BRC
NCB
RCPCH & Us
GOSH BRC Parent and Carers Research Group PenARC PenPIG and PenCRU
9
Appendix 1 – examples of planned PPI work in Theme 3 - Long-term conditions and disability
Objective Groups to involve What are we asking Time frame
Objective 1: co-ordination of care GOSH BRC PCAG GOSH YPF
Do the co-ordination of care indicators that we can develop in HES make sense? What else should we look at
~Month 9-12
Objective 2: LA spend GOSH BRC PCAG GOSH YPF
What sort of outcomes may be affected by reductions in LA spend?
Eg emergency admissions for children with disability?
~Month 9-12
Objective 3: mental health of children, mothers, siblings
National Autistic Society SIBS UK
Mencap
New data knowledgeable young people advisory group at King’s/SLAM
What mental health outcomes should we look at?
For what ages? Are there ‘critical periods’? Eg just before
diagnosis?
Should we consider
‘disruptive/difficult behaviour’?
~Month 18-24
Objective 4: new linked data sources NCB GOSH YPAG GOSH PCAG Generation R Scotland Views on acceptability/usefulness of linking new data sources
01/12/2018 workshop
could work better together to support children and young people with chronic health conditions?
NCB Young Research Advisors
(YRA) Gilbert HEAD N/A Gilbert, Hardelid
NCB notes, CPRU slides
10/04/2019 workshop
to discuss family health research using administrative health data
SIbling REsearch Networking
(SIREN) Hardelid 3
Hardelid,
Zylbersztejn CPRU slides
15/06/2019 workshop to explore views on multimorbidity research
NIHR Young Persons Mental
Health Advisory Group Walker Response Walker
19/06/2019 workshop domestic violence and abuse - core outcomes
individuals with lived experience
- survivor researchers Howarth 2 2
Howarth, Powell, Feder
Joint with Violence Abuse and Mental Health Network (VAMHN) notes taken as part of research project 01/07/2019 consultation visits
to share emerging research from the HeadStart programme, consult on future planned research questions and invite young
people to pose their own research questions HeadStart young champions Deighton 1 1 Stapley
from 01/07/19 - 30/8/19 multiple
consultations with young people in different geographic areas linked to HeadStart, consultation was used to review and refine current research questions feeding into both HeadStart in general and the CPRU project
notes taken as part of research project. Held by Deighton
06/07/2019 workshop to explore views on multimorbidity research
NCB Young Research Advisors, FLARE, Making Ourselves Heard
Network Walker Response Walker
28/08/2019 workshop
Using hospital and school data for research to improve health and education
KCL Adolescent Mental Health
Advisory Group Gilbert HEAD N/A Gilbert
KCL notes, CPRU slides
05/09/2019 workshop child maltreatment - core outcomes
individuals with lived experience
- survivor researchers Howarth 2 2
Howarth, Powell, Gilbert notes taken as part of research project 11/10/2019 workshop
to discuss admin data and local variations in
health outcomes for children NCB FRAG Hardelid N/A N/A Hardelid, Nath
this was a School for Public Health Research
activity, but relevant to CPRU Hardelid notes
14/11/2019 training admin data and data linkage GOSH PCAG Hardelid HEAD N/A Hardelid, Wijlaars
18/11/2019 workshop
to discuss proposed work on coordination of care for children with learning disability and
autism GOSH PCAG Hardelid 3
Hardelid, Zylbersztejn
CPRU slides and materials, H&Z notes
23/11/2019 workshop to consult on CYPPPI strategy NCB Young Research Advisors Walker CYPPPI N/A Walker, Gilbert
NCB notes, CPRU slides
23/11/2019 workshop
to discuss the health of children with learning
disability and autism, and their families NCB Young Research Advisors Hardelid 3 3 Gilbert
05/02/2020 conference
to share learning and invite discussion and debate to shape future research
HeadStart young champions, YoungMinds young people, NCB
young people Dieghton 1 1
Deighton, Stapley,Yoon, Walker, also Rachel Conner
young people set the agenda and co-led the day
briefing planned and notes taken on the day (held by Deighton)
