NIHR strategic plan: ‘promoting a research active nation’ for children and young people

Yesterday the National Institute for Health Research (NIHR) published a new five year strategic plan ‘Promoting a research active nation’ setting out a new programme to encourage public engagement and participation in health, social care and public health research.

Simon Denegri, Chair of INVOLVE and NIHR National Director for Public Participation and Engagement in Research, has written a great post on this. Although the strategy applies to children and young people as well as adults it’s great to see involvement being given some specific mentions, given the increasing interest in this area (see my last post):

  • In relation to improving patient recruitment
  • Working with young people to help design and develop a range of research ‘apps’ that will help enthuse young people about research and encourage their participation in research studies
  • Publishing exemplars of how public involvement has improved patient access to research for children and young people

Involving children and young people in research – next steps

Following the events organised by People and Research West of England on involving children and young people in health and social care research, I’ve created a new page with information and resources as it seems to be an area in which there is growing interest. One of the issues emerging in my recent conversations on this subject has been the relative lack of published information and ‘evidence’ (in the researcher sense of peer-reviewed and critically reflective accounts) on public involvement with children and young people. So hopefully this page will be a start and additions and comments are of course very welcome!

I also recently gave a presentation a couple of weeks ago at INVOLVE‘s annual symposium for advisory group members, along with Jenny Preston, from the NIHR Clinical Research Network (Children).  Jenny and I were invited to start a discussion on ‘involving and engaging young people in research’ and my presentation gave an overview of some of the issues, opportunities and challenges from my experience and discussions at the PRWE fora:

Jenny then followed with a presentation she and colleagues at the NIHR Clinical Research Network (formerly Medicines for Children Research Network) are doing with their young people’s advisory groups. This included highlighting plans to continue the Generation R work they started last year (see films and report).

 In the discussions which followed there was a real sense of buzz and momentum around CYP’s involvement in research, both in its own right and as something that could information public involvement in research more widely. More developments to follow – watch this space…




The digital doctorate: one postgraduate researcher’s virtual journey

Yesterday I gave a presentation to some other postgraduate researchers on my experience of using social media in my PhD research. This post contains a bit more information on that presentation and the material that inspired it, but it’s an ongoing journey so feedback and ideas from others would be great – I still have a lot to learn!

The inspiration for both the title and some of the content of this presentation and post comes from Dr Paul Spencer at the UWE Graduate School and his Digital Doctorate blog, in particular the workshop he ran last year on ‘the Digital Researcher’ (see blog post). The workshop opened my eyes to the potential and possibilities of social media for me as a researcher, as well as getting me thinking more about the use of social media as a research tool.

So here’s the presentation (also my first attempt at using Prezi, which alas it seems it’s no longer possible to embed into blog posts).

As well as this blog and the usefulness (and distraction potential!) of Twitter I also talked about how useful I’d found the #PhDforum academic writing portal, which has a monthly virtual writing retreat. As I live in a different city from my university and often work from home, virtual connections can be really helpful. I wasn’t sure how it would work at first but found that using the portal planner was a great support in helping me to set some writing goals and hold myself to account. The mid-week Twitter chat was also really useful for some virtual peer support. The best thing was ending up with a first draft of my methodology chapter!

Then there’s the whole issue of using social media as a research tool, and the work I’m involved in with INVOLVE on using social media to support public involvement in health and social care research – but that’s for another post…

Involving children and young people in research – PRWE forum

There is increasing interest in children and young people’s involvement in health, public health and social care research. In early 2013 People and Research West of England decided to create a forum for researchers in the area who are involving children and young people in research and/or interested in patient and public involvement (PPI) with children and young people to come together to hear about each others work; explore some of the common issues of working with these groups and to learn from each others experiences.

The first meeting of this group took place in April 2013, and this is my presentation from that event:

Follow this event a second meeting was organised on 20th November 2013 by Claire Novak, Research Fellow at the Centre for Child and Adolescent Health, University of Bristol. Below is a report from the day which was attended by 15 researchers from universities, NHS Trusts and the voluntary sector.

We started off with a presentation about definitions of public involvement and how these relate (or don’t) to children’s rights:

The recent UN Committee Rights of the Child General Comment on Article 24 (the right of the child to the enjoyment of the highest attainable standard of health) and it’s relation to participation rights can be found here. The INVOLVE Briefing Notes for Researchers include the definitions of involvement, participation and engagement discussed.

This was followed by a presentation by Barry Percy-Smith, Associate Professor of Childhood, Youth and Participatory Practice at the University of the West of England on ‘issues, challenges and possibilities’ in children and young people’s participation:

Further information on Barry’s work and the papers he referenced are available here.

We then had three practical examples of applying these principles into practice. I started by talking about the challenges faced in involving young people in a study in which I’m leading the public involvement with my colleague Lorna Templeton:

Claire Novak then talked about her work supporting the Young People Advisory Groups run by The Centre for Child and Adolescent Health, UWE/UoB :

Since 2010 the Centre for Child and Adolescent Health (CCAH) have run two school-based Young Peoples Advisory Groups (YPAGs) in Redland Post 16 Centre and latterly, Fairfield School. The YPAG Redland Green Post 16 Centre is now in its fourth year and is made up of young people aged 16-17 years who have either been educated at the Redland Green School or in one of the feeder schools across Bristol. Fairfield School is one of these and we have a YPAG there, now in its third year. This is made up of 14-15 year olds with a wide range of different heritages. The YPAG model we devised provides a mutually beneficial vehicle through which to access young people as “experts” on being young people rather than a specific condition or disease. The YPAGs meet weekly during a lunch-time where we provide snacks and drinks. All those attending are volunteers who are encouraged by the school staff to be involved. Working with the CCAH is seen as providing a broadening experience and adding value to their school work. It is promoted as enhancing the members portfolio and “making them stand out” when applying for college, university or employment.

In the last few years, researchers have consulted on study proposals, associated documents, research tools such as questionnaires, on research ideas, testing smart phone apps including accessibility and user-friendliness. The YPAG have provided high quality critiques and helpful advice which have been incorporated into research study and ethics applications. They have also acted as focus groups and advised on initial ideas for research.  Initially, the consultations were from within CCAH. However recent developments have engendered consultations from other organisations such as Centre for Appearance Research, UWE and Canynge Hall, UoB. Researchers range from undergraduate, MSc, PhD students  through to professional researchers. The YPAGs have also devised, conducted and presented their own research to members of the CCAH following a programme of learning about research developed by the Team to provide continuity of contact and retention of the YPAG members during those weeks when no consultation/ opinion is required. The development of the model YPAG also promotes good practice, strong relationships and positive experiences for potential university applicants.

Makaela Jacobs-Pearson then talked about the work that Children of the 90s (ALSPAC) have been doing to involve young people in their work:

The Original Cohort Advisory Panel (OCAP) was first set up in 2006 as the Teenage Advisory Panel (TAP) and is the Children of the 90s (Co90s) advisory panel of study young people. Over the past seven years it has developed into a group of twenty-three participants who meet six times a year. OCAP members take an active role in organising and running these meetings, whilst still being supported by the Participation Team, and have two chairs, a secretary and a minute-talker. All members are volunteers and receive no payment for being part of the panel, although travel costs, expenses and refreshments are provided.

As a panel, the OCAP members are able to comment and give feedback on (and ultimately shape) many areas of the study. These include questionnaires, clinics/sub-study design and documentation, research proposals on use of ALSPAC data, newsletters, website design and much more. In the last year they have created a ‘Participant Information Sheet’ (PIS) guideline document to help ensure that all information sent to participants is presented in a user-friendly manner, whilst still containing all the relevant information. OCAP members may also volunteer to represent Co90s at wider public and scientific events across the country.

As some of the members of the study are no longer living in Bristol, every effort is made to ensure that they are all able to contribute, with many now Skyping in to meetings or submitting comments via emails and the OCAP Facebook page.

Being an OCAP member provides these participants with a great opportunity to get involved with a world-renowned scientific project, to learn more about research and to gain experience of working in a team, project planning, public speaking and potentially working with the media. OCAP play a valuable and integral role in shaping the future of the Co90s study.

These presentations were followed by some general discussion and a ‘world cafe’ and a report on these discussions is attached here.

More information on future meetings will be posted on this blog, and we hope that these discussions will continue at a national level. Watch this space…

Embedding young people’s participation in health – workshop at AYPH/YPHSIG conference Oct 13

Further to the event in the summer (see earlier blog posts), I followed this up with a workshop at the Association for Young People’s Health (AYPH) and RCPCH Young People’s Health Special Interest Group (YPHSIG) conference on ‘addressing young people’s health inequalities’ in London on 18th October.

My co-presenters were:

  • Dawn Rees from the Office of the Children’s Commissioner talking about the challenges and opportunities facing clinicians, commissioners, mangers, policy makers and the government in embedding children and young people’s participation in health services, with particular reference to the UN Convention on the Rights of the Child and current policy and practice in England.
  • Bekki Redshaw from Healthwatch Torbay talking about the exciting work they’re doing to engage young people effectively within the new health system in England
  • Damian Wood (YPHSIG Convenor, 2009-2012), Bharti Mephani and young people from the RCPCH youth advisory panel giving examples of some of the ways in which they’ve influenced child health policy and practice. I hope to include some thoughts from the young people and the video they showed at a later date, so watch this post for updates if you’re interested.

The presentation from the workshop is below:

In line with the aim of this being an ongoing conversation I then outlined the draft findings from the July workshop (see previous post). Participants then had an opportunity to reflect on their own experience and consider what it might mean for them to embed children and young people’s participation in their service or organisation. Unfortunately we were running short on time, but people were directed to this blog and the #cyphsc Twitter to tag to continue the conversation.

Learning from this workshop will also inform the work of the RCPCH, YPHSIG and OCC to advocate for improved healthcare for children and young people, as well as the next stages of this research. Watch this space for more as the conversation continues…

Reflections on embedding CYP’s participation: report from July workshop

Following a break over the summer the project is now full-steam ahead, with fieldwork underway in both case studies. I’ll post more updates as things progress, but in the meantime here is a summary of ideas emerging from group discussions at the workshop on 10th July (presentations etc can be found here and a young person’s report on the day here):

A number of key ideas emerged from the discussions on what workshop participants thought needed to be in place for children and young people (CYP)’s participation to be embedded in health and social care services and settings: Integrated and integral The current changes in health and social care, and increasing interest in CYP’s participation and public involvement and engagement, were felt to provide opportunities as well as challenges. For CYP’s participation to be embedded workshop participants felt that it needs to be a routine and central part of what all health and social care services, organisations and staff do, integral to organisational purpose, structure and processes and fundamental to effective service delivery and CYP’s wellbeing. There needs to be sustainability and a commitment to consistency, rather than participation being linked to one-off projects (although such projects can be catalysts to start embedding participation). It needs to be planned from the outset and not an after-thought or add-on, with sustainable and realistic funding and resources, long-term planning and a commitment to consistency. It needs to happen at all levels including individual care, planning and delivery of services, evaluation and feedback, role development and recruitment, staff training, strategy and commissioning – incorporating participation, creativity and a listening culture into everyday work. Meaningful Embedded participation needs to be linked to what’s important to CYP, ‘not just ticking a box’ and also be planned in a way that makes it interesting, accessible and relevant to CYP’s lives.  In order to make the case for participation from a clinical perspective, participants thought it should also be seen as integral to the quality of service delivery, e.g. are CYP more likely to engage with services and treatment if they feel that they’re being listened to, in a service which is seeking to meet their needs through speaking to them or their peers rather than making assumptions? Embedding participation was felt to be about getting services right through CYP being empowered to demand better care, not being dependent on professionals changing voluntarily. So a culture change in which CYP work alongside health and social care services and organisations to create more accessible and user-friendly services which better meet their needs, underpinned by a commitment by senior managers and commissioners to promoting and monitoring participation. Well-supported As well as drawing on existing resources (see ‘collaboration’ above) support, guidance and training on participation were seen as important for CYP, staff and organisations . When planning participation services and organisations also need to consider reward and recognition for CYP, including considering issues of payment, accredited training etc. Inclusive and flexible Reflecting the diversity of CYP and equality of opportunities issues identified at the start of this report, it was felt that information about participation  opportunities, what will be involved and benefits needs to be easily accessible to every CYP using health and social care services, their families and those working with them – linked to school and other social and education programmes. People felt that it was important for CYP’s participation in health and social care to be flexible, with a combination of formal and informal (eg everyday conversations and feedback) participation to improve dialogue and engagement. Realistic Embedded participation should start from the grassroots – ‘start small, participation does not have to be big’. It was also felt to be important not to over-promise, even with the best of intentions, and that it was better to be honest with CYP about what can and cannot change and why, but also challenge existing structures and processes where possible and appropriate. Participants thought that health and social care organisations needed to be better at costing up and committing the time and budget necessary for the participation they are planning, and if budget is limited explore creative alternatives or look to the voluntary sector for examples of how to support participation with limited resources. Collaboration and sharing learning It was seen as important that good participation be based around collaborative working – within and across organisations and between adults and young people. Shared ownership was felt to be essential, with CYP and adults supported to work together and services and organisations being open to criticism and change. Outputs and outcomes from participation and resources and other outputs should be shared within organisations and more widely (eg online), including information by and for young people. Participants also thought that existing guidance such as ‘Hear by Right’, ‘Young People Friendly’ and ‘You’re Welcome’ and other available resources should be more widely disseminated within health and social care. Demonstrating impact It was thought to be really important to be clear about who benefits from participation, how and when – and to demonstrate that it is meaningful for all involved. In order to understand how participation is working and how it can be improved CYP’s participation should be constantly reviewed and evaluated, with input from CYP, staff and organisations. ‘It needs to be recorded, reported and fed back to service users’. It was seen as really important to be able to demonstrate the impact and outcomes of participation, with CYP and adults involved seeing that something has happened as a result of their participation and feeling that their contributions are valued. Participants said that being listened to needs to be linked to changes in service delivery, demonstrated though organisational monitoring against measures set by CYP. ‘Don’t ask the questions if you’re not going to act on the answers’ and also involve CYP in deciding what those questions should be. But health and social care organisations should also remain aware that participation is not just about outcomes and change, but also about the quality of the process and an ethic of practice and co-learning.

Next steps…

The full report on the group discussions is available here: Embedding CYP’s participation in health and social care services_report on 10.7.13 workshop The ideas above are the start of an on-going conversation, and I’ll be running a workshop at this conference on 17-18 October with colleagues from the Office of the Children’s Commissioner, the Royal College of Paediatrics and Child Health and Healthwatch where we’ll use these ideas to further explore the issues around embedding CYP’s participation. Further information will be posted on this blog as the project progresses. Contributions to the debate, including responses to this report, are also very welcome. I really hope this blog can be part of the collaborative process!

Guest post: a young person’s report on the workshop

Following on from my last post: while I’m still looking through all the notes from last week’s workshop, one of the young people who attended sent me this fantastic report of the day. Huge thanks to Ellen Thompson (aged 14) for writing this excellent overview, and for agreeing that I could publish it as a guest post. Now I just need to follow it!

Embedding children and young people’s participation in health and social care services


King’s College, London


A round-up of the presentations and discussions

Maggie Atkinson – Children’s Commissioner For England

Maggie Atkinson suggested that the NHS sees children as people whose opinion doesn’t count and this clearly must change as children and young people are big users of the NHS. She said that every child has the basic human right to have their voice heard and taken seriously in every aspect of their life including their health and social care. It was also suggested that for children to understand what health and social care they had, the information they were given had to be written in plain English. This would also help them to decide what rights they had.

She strongly suggested that children were experts in their own life and therefore should be able to put their views across to their health and social care services. Any form of participation had to reach both children living in rural and urban areas so their opinions from across the country could make a difference. It was also brought to our attention that when a child reaches 18 any extra support they were given is lost even though it is still needed.


Amanda Allard – Principal Officer, Council For Disabled Children

Amanda Allard said that children and young people are often so happy to receive any health or social care that they don’t feel that complaining is the right thing to do, even though it could help them and others. To make sure that children and young people take the advice given to them we must listen to them when they have any issues. To help the children and young people to feed back their views, they need to understand about how the NHS works and how to make complaints.

Investing In Children


Investing In Children is a partnership between the local authority in Durham and the NHS to promote the Human Rights of young people. They run various participation activities. They sent young people out to review local health and social centres to see if they were suitable for young people. This was called mystery shopping and the example given focused on sexual health. They would give feedback on how to improve services, and if the organisations followed this they would receive an award. This is a good way to get young people involved in participation as they don’t have to sit on a panel.

Association For Young People’s Heath – Be Healthy

Be Healthy was a project that got young people to try to show other young people and managers of health and social care services how the services should be run, so that young people would want to use them and would benefit fully from them. They also suggested that young adults should be able to talk about health issues they want to talk about, not what adults thought they should talk about.

Young Minds- VIK

The VIK or Very Important Kids’ panel was set up to try to improve mental health services for young people. They would do activities to raise awareness, and also talked to many mental health services. One girl who was part of VIK talked about how being part of participation had helped her become a lot more confident. She could now use public transport on her own; she also made lots of friends and felt she was more able to cope with her mental illness.

North Bristol Community Children’s Health Partnership

The HYPE (Helping Young People Engage) team of the North Bristol Community Children’s Health Partnership involve children in different levels of their local healthcare facilities, such as those for mental health, children’s therapists, disabled children and children in care. Projects the children and families are involved in include recruitment of staff, making art work and designing leaflets.

East & North Hertfordshire NHS trust 

This project showed children from a school in Stevenage that the NHS is an exciting place, offering many career choices, not just those for doctors and nurses. The children who took part designed a new look for the Lister Hospital so it would appeal to teenagers aged 14-16. They then had to do a Dragon’s Den style presentation to managers at the hospital. This gave them the opportunity to develop their design skills, confidence and teamwork skills.

Pupils also ran a health awareness stall at a health action day, and will be involved in community work in the future.

In general:

The main points that came across through discussions were that participation should be a shared responsibly at all levels in health and social care services.  All participants should be shown how their input actually helped. It was also important that the young people involved knew that there may be limitations to what could be achieved – and that everyone can have fun being involved.