How is the Charter being used?

We asked healthcare professionals, researchers and patient public involvement leads how they use the Charter in their work settings. Here we bring together case studies on how the Charter has been used to raise awareness of the importance of child health research.

Please look through for inspiration on how to use the Charter in your setting. If you have a case study on how you or your team have used the Charter then let us know

Case studies list:

Research skills training for neonatal professionals brings awareness

The British Association of Perinatal Medicine (BAPM) delivers basic research skills training for all neonatal professionals in London and Edinburgh. 

The training includes the Charter to help bring awareness of the importance of children, young people and families having the option of being involved in research.

One consultant neonatologist says, “It has reinforced the importance of child health research and provided online resources for delegates to access.”

 

Case Study - Research Skills Training for Neonatologists

Project / Initiative / Programme name BAPM Research Skills Training
Type of case study Raising awareness, Developing skills
Type of research setting / role National and Regional training
When did your case study take place? Over last 2 years
Where did your case study take place? In London and in Edinburgh
Please sum up your case study in one sentence We delivered basic Research Skills Training for trainees and nurses.
What is your top tip for someone thinking of doing this for the first time?  Speak to BAPM and use the materials we have produced.
What difference has the Charter made? It has reinforced the importance of child health research and provided online resources for delegates to access.
How did you use the Charter? We did not use it directly, but signposted delegates to it.
Why do you feel involvement of children, young people, parents or carers important in child health research? Every child should have the option of taking part in research, both for reasons of equity and so that research evidence is accumulated more efficiently.
What resources were needed to make this work?

1. Funding from professional organisations and sponsorship commercial organisations

2. A moderately large faculty of speakers and facilitators

3. Professional actors

4. Administrative support

Do you have suggestions for participation, involvement or engagement resources, toolkits or contacts you have found useful? 

1. Online evidence-based medicine resources including CASP and CEBM

2. Bliss (a charity representing parents and carers of babies) for parent speakers and for materials explaining research to parents.

 

Participation group creates opportunities for young people's involvement in research

The University Hospital Southampton have established a young adult / patient public participation group to create new opportunities for young people to be involved in research. 

A public and patient involvement officer calls it, “working together to better represent the unheard of voices of 16-24 year olds in health research”.

 

Case Study - Participation Group at University Hospital

Project / Initiative / Programme name Establishing a young adult PPI group
Type of case study Creating new opportunities 
Type of research setting Research hospital
When did your case study take place? 2016
Where did your case study take place? University Hospital Southampton
Please sum up your case study in one sentence Working together to better represent the unheard voices of 16-24 year olds in health research .                               
What is your top tip for someone thinking of doing this for the first time?  Reach this audience by using an appropriate communication channel, eg Facebook.
Why do you feel involvement of children, young people, parents or carers important in child health research? They have expertise and insight that the researcher might not have.
What resources were needed to make this work? Funding, staffing commitment

 

Young people from across Europe offer insights to help us develop the Charter

The RCPCH attended the International Children Advisory Network summit in Barcelona in 2016. This is an opportunity for children and young people interested in medical research to come together.

We delivered a session to over 100 children and young people to launch the Charter intenationally and to gain their insights for our next stages of development. The delegates told us about their passion and enthusiasm for healthcare research: we need to use this throughout the research process. 

Young people told us they want...

  • “For children, youth and families to be involved so research is more successful for everyone involved!”
  • “Young people to be involved as co-researchers in every aspect of research”
  • “To take in consideration the children's opinion and make sure they get immersed in the research”
  • “For there to be a greater focus on developing medical devices and treatments for children- not just adults”
  • “To learn about how the charter was developed and how we can bring this to Canada”

They said to engage young people we need to…

  • “Be on social media in order to promote it around the world”
  • “Use apps and social media to do polls/ask for the opinion of young people on important issues in research”
  • “Adapt trials to make them more accessible for young people”
  • “To try and plan an information stand at our hospital  involving patients, parents and doctors”
  • “Create fun interactive ways that will make the children interested”

They planned to take away...

  • “Encourage others to take part in medical research”
  • “Inform and encourage my friends and peers to learn about and consider being involved in research”
  • “Talk to families that I know about child clinical trials”
  • “Reconnect doctors with the patients and remind them about the whole reason they do paediatric research in the first place”

 

Case Study - International Children's Summit

Project / Initiative / Programme name International Children’s Advisory Network Summit
Type of case study Raising awareness 
Type of research setting Research conference for young people
When did your case study take place? June 2016
Where did your case study take place? Barcelona 
Please sum up your case study in one sentence Attended the International Children Advisory Network summit and carried out a session to over 100 young people around the ICYP research charter – to raise awareness of the Charter and obtain insights from young people on how they wanted to be involved in research.            
What is your top tip for someone thinking of doing this for the first time?                                                                       Ask young people what they want - they have many ideas around how they should be communicated with and engaged.
What difference has the Charter made? It has reinforced the importance of child health research and involving children and young people in the process.
How did you use the Charter? A presentation on the charter, and distribution to all attendees at the summit, and a question and answer session.
Why do you feel involvement of children, young people, parents or carers important in child health research? Every child should be consulted and have the option of taking part in research, and this should be communicated to them in an easy-to-understand way.
What resources were needed to make this work? There are no specific resources required; however the Charter website offers a video, webinar and useful resources to help the charter to be communicated widely.

 

Improving workforce confidence in involving children and young people in Child Health Research.

A NIHR divisional research meeting hosted at Stoke Mandeville brought together over 30 child health researchers, clinicians and those beginning their research journey to find out more about the Charter, and to discuss potential approaches for involving children and young people.  In a session led by the Research &Us team from RCPCH, the group explored challenges and opportunities to involving children and young people in child health research.

Project / Initiative / Programme

Workforce training – involving children and young people in child health research

Type of Case Study

Workforce

Type of Research Setting

Mixed

When did your case study take place

2016

Where did your case study take place

Thames Valley and South Midlands Clinical Research Network

Please sum up your case study I one sentence

Training session looking at the challenges and opportunities to involving children and young people in child health research

What is your top tip for someone thinking of doing this for the first time

Start with a stakeholder mapping exercise – who do you know locally who can facilitate access to children and young people? Is a clinician a school trustee for a school based session? Could you do a clinic chat in the waiting area for an outpatient clinic to ask for initial views or to recruit to an advisory board? Do you have local groups like children in care councils (Local Authority), youth forums (Local Authority / Town Councils, Youth Charities) or condition specific forums for children, young people or parent carers? Start with a stakeholder map and start with who you kind find and speak to easily then you can target your gaps.

Why do you feel involvement of children, young people, parents or carers is important in child health research?

Involving in child health research of children, young people and parents or carers is vital at every stage to sense check and patient proof what is going on. Does it make sense? Will there be an outcome that will make a difference to patients? What are the different ways, at different times that they could be involved? Generating involvement ensures it is more effective and supports Article 12 of the UNCRC (involvement in decisions) and Article 24 (best health possible).

What resources were needed to make this work?

Research &Us trainer, access to the CRN members, room


Ideas from the CRN on how to support researchers to embed “Research &Us” in their practice?

  •          Help to design information
  •          Implement a policy that enable simplicity
  •          Short, simple information about how to embed
  •          Create a culture of research
  •          Ask researchers!
  •          Education about social networks, media etc.
  •          Young people to talk to
  •          Young people to choose the time and venue
  •          IT / Technology and access to communication apps
  •          Research related to particular studies / conditions
  •          NIHR / CRNs to embed the Charter in their practice and to educate researchers
  •          Databases to register on if interested in research
  •          To make it part of the regulatory approvals to reference the Research &Us Charter
  •          NIHR course on creating a young person’s advisory group
  •          NHS England recognition in trust boards for involvement in research
  •          Embed research in clinical care
  •          Financial recognition of cost of recruitment – equipment, printing
  •          Introduction to research for schools so children and young people are more aware

 

Making the Research &Us Charter meaningful to us – a simple step for local settings.

Following the launch of the Research &Us Charter in 2016, we have been receiving requests from local settings to create personalise versions so that the information is seen as locally meaningful and relevant to local researchers, managers and boards.  To request your personalised charter, contact research@rcpch.ac.uk

Project / Initiative / Programme

Personalised charters

Type of Case Study

Awareness Raising

Type of Research Setting

Hospital

When did your case study take place

2016

Where did your case study take place

Great Ormond Street Hospital

Milton Keynes University Hospital

Please sum up your case study I one sentence

Personalisation of Research &Us Charter

What is your top tip for someone thinking of doing this for the first time

Think about who needs to be listed and where it needs to be displayed. Different approaches across the two examples from a generic research email to a named staff member.

 

In displaying the Research &Us Charter be creative – every workstation, every door to a lab, sent by email, displayed in a noticeboard, attached to payslips, integrated into induction or training resources, coasters on managers desks – all examples of how personalised materials have been deployed!

Why do you feel involvement of children, young people, parents or carers is important in child health research?

Children and young people should also be involved in raising awareness of why they should be involved in research so that the message is clearly understood –involve at all points possible!

What resources were needed to make this work?

Personalised Charter from Research &Us team

 

Participation group creates opportunities for young people's involvement in research

The University Hospital Southampton have established a young adult / patient public participation group to create new opportunities for young people to be involved in research. 

A public and patient involvement officer calls it, “working together to better represent the unheard of voices of 16-24 year olds in health research”.

 

Case Study - Participation Group at University Hospital

Project / Initiative / Programme name

Establishing a young adult PPI group

Type of case study

Creating new opportunities 

Type of research setting

Research hospital

When did your case study take place?

2016

Where did your case study take place?

University Hospital Southampton

Please sum up your case study in one sentence

Working together to better represent the unheard voices of 16-24 year olds in health research .                               

What is your top tip for someone thinking of doing this for the first time? 

Reach this audience by using an appropriate communication channel, eg Facebook.

Why do you feel involvement of children, young people, parents or carers important in child health research?

They have expertise and insight that the researcher might not have.

What resources were needed to make this work?

Funding, staffing commitment