Louca-Mai Brady

#APA2015

@louca_mai

Consultation is the process by which children and young people are asked their opinions – on a specific issue or broader agenda (eg as research participants)

Participation/involvement is the process by which individuals and groups of individuals can influence decision-making and bring about change (eg through involvement in the planning and process of research)

Participation Works

What do we mean by

involvement?

INVOLVE definitions Involvement: Where members of the public are

actively involved in research projects and in

research organisations

Participation: Where people take part in a research

study

Engagement: Where information and knowledge

about research is provided and disseminated

INVOLVE (2012). Briefing notes for researchers. www.invo.org.uk

Defining public involvementINVOLVE define ‘public involvement as:

“research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”

The public are defined as including:

“patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services… [as distinct from] people who have a professional role in health and social care services”

INVOLVE (2012). Briefing notes for researchers. www.invo.org.uk

Article 12 . Every child and young person has the

right to express his or her views freely in all matters

affecting them

Article 13. CYP have the right to freedom of

expression, including the right to all kinds of

information and ideas

Article 24: CYP have the right to

good quality health care and

information to help them stay

healthy

UN Convention on the Rights

of the Child (UNCRC)

General comment on Article 24Article 12 highlights the importance of children’s participation...This

includes their views on all aspects of health provisions, including, for

example, what services are needed, how and where they are best

provided, barriers to accessing or using services, the quality of the

services and the attitudes of health professionals, how to strengthen

children’s capacities to take increasing levels of responsibility for their

own health and development, and how to involve them more effectively

in the provision of services, as peer educators. States are encouraged

to conduct regular participatory consultations, which are adapted to the

age and maturity of the child, and research with children, and to do this

separately with their parents, in order to learn about their health

challenges, developmental needs and expectations as a contribution to

the design of effective interventions and health programmes” (UN,

2013).

Rights in legislation, policy and

practice 1989 Children Act

2014 Children and Families Act

Children’s Health Outcomes Forum

YP’s participation in national NHS structures and processes

Tools and quality criteria: Hear by Right, You’re Welcome, Young People Friendly

Continued NIHR commitment to public involvement & increasing interest in public involvement with CYP

Campaigning work of organisations working with CYP and young people’s groups

“This expectation for patient and public

participation has no age limit. Children and

young people…should be encouraged and

facilitated to participate in decisions about their

own care and, more broadly, about the health

and social care services and policies that

affect them”.

Annual Report of the Chief Medical Officer

2012 - Our Children Deserve Better:

Prevention Pays (DH, 2013).

INVOLVE supports

public involvement in

NHS, public health and

social care research

INVOLVE conference 2012

www.involve.nihr.ac.uk

What we aspire to:

A dynamic partnership between

the public, researchers and others,

to advance NHS, public health and

social care research and improve

the health and well being of the

population

A national advisory group funded

by, and part of, the National

Institute for Health Research.

What is INVOLVE?

Simon DenegriChair of INVOLVE &

NIHR National Director for

Public Participation and

Engagement in Research

How we do it:

INVOLVE Strategy 2012–15

Annual operating plans

INVOLVE Members

INVOLVE Coordinating Centre

Annual Budget approx £750k

29 current INVOLVE members

service users

carers

members of the public

researchers

public involvement specialists

research managers

health and social care practitioners

people from voluntary sector

organisations

INVOLVE members

INVOLVE members 2013

See: www.involve.nihr.ac.uk/about-involve/who-are-involve/

LEAD across the National Institute for Health Research

Build and share the EVIDENCE BASE

Develop CAPACITY

and CAPABILITY

Influence research

POLICY and PRACTICE

WORKING IN PARTNERSHIP

Work of INVOLVE

LEAD on public involvement across the NIHR

INVOLVE supports shared learning

groups for public involvement with:

NIHR Research Programmes

NIHR Collaborations for Leadership

in Applied Health Research and Care

Sharing knowledge

and experience

INVOLVE’s

mailing list

4,000+ people

40+ countries

Responding to individual

enquiries from members

of the public, researchers

and others

Build and share the EVIDENCE BASE

Evidence Librarywww.involve.nihr.ac.uk/resource-

centre/evidence-library/

An on line database of nearly 300

summaries of reports on the nature,

extent, impact and reflections on public

involvement in research.

invoNETwww.involve.nihr.ac.uk/invonet/

A network of 200+ people with a

shared interest in researching public

involvement in research.

invoNET 2012

Develop CAPACITY and CAPABILITY

Briefing Notes for Researchers:www.involve.nihr.ac.uk/resource-

centre/resource-for-researchers/

INVOLVE Conferencewww.involve.nihr.ac.uk/news/confe

rence/

Visit: www.involve.nihr.ac.uk

Influence research POLICY and PRACTICE

•facilitating and leading on coordination of public involvement across the NIHR•developing new and existing partnerships and alliances to promote public involvement in research.•improving accessibility of research to the public

3 things you can do:

1. Sign up to receive our newsletter

and email alerts: www.involve.nihr.ac.uk/about-

involve/keep-in-touch/sign-up-for-mailing-list/

1. Explore our websites:

www.involve.nihr.ac.uk

www.peopleinresearch.org

2. Contact us INVOLVE:

Telephone: 023 8065 1088

Email: admin@invo.org.uk

Editors-in-Chief:

Sophie Staniszewska (UK)

Richard Stephens (UK)

researchinvolvement.combiomedcentral.com

• High visibility – permanent,

unrestricted, free online access

• Respected Editorial Board

committed to the values of

Involvement and Engagement

• Rapid and thorough peer review

• Only international journal

co-produced by patients and

researchers

Why involve children and YP in research? Involving those on whom

research is focused can have a positive impact on what is researched, how research is conducted and the impact of research findings (Staley, 2009)

Increasing recognition that involving children and young people in research is not the same as involving adults

Debates in patient and public involvement about who does, and who doesn’t, get involved in research

Tom’s story: http://www.invo.org.uk/thisismystory/

How we see children and YP Objects of inquiry, vulnerable,

adults-in-waiting or ….

social actors + childhood a social space in which children can and do have agency?

Development of research with children and young people has coincided with the development of the children's rights movement , reflected in policy, legislation and practice

Increasing interest in children’s involvement in research, both as sources of data and through their active involvement in the research process

A model of children and young people’s involvement in research (NCB, 2011)

CYP have increasing control of the research process

CYP have

ownership of the research

CYP are

sources of research

data

CYP are actively involved in aspects of the

planning and process of research

CYP are research

participants

CYP are

collaborators in the research

CYP are

consulted about the research

Practical and ethical considerations

Recruitment

Gatekeepers and role of parents and carers

Consent and data protection

Availability

Communication

Induction, training and support

Reward and recognition

Child protection, safeguarding and safety

Clinical Research Network

Children

24

Patients as Partners

Clinical Research Network

Children

•Learn about health/clinical research in monthly meetings

•support and work in partnership with researchers in the

delivery of health research

•provide input and collaborate with key organisations

such as National Research Ethics Service (NRES), Royal

College Paediatrics Child Health (RCPCH), NIHR Clinical

Research Facilities (CRFs), R&D within Hospitals,

Academic Health Science Networks (AHSNs) to promote

the research agenda and more importantly the

involvement and engagement of young people in their

processes

•Video: http://www.crn.nihr.ac.uk/children/pcpie/young-

persons-advisory-group/

Role of the group

Clinical Research Network

Children

Key Achievements

Improving the quality of

studies

Ethical Guidance

Outreach& Awareness

in the Community –

Science Fairs, Conferences, School

visits

Awareness Raising & Education

www.decipher.uk.net

ALPHA – Advice Leading to Public

Health Advancement

The work was undertaken with the support of The Centre for the Development and Evaluation of

Complex Interventions for Public Health Improvement (DECIPHer), a UKCRC Public Health Research

Centre of Excellence. Joint funding (MR/KO232331/1) from the British Heart Foundation, Cancer

Research UK, Economic and Social Research Council, Medical Research Council, the Welsh

Government and the Wellcome Trust, under the auspices of the UK Clinical Research Collaboration, is

gratefully acknowledged.

www.decipher.uk.net

DECIPHer has infrastructure funding for public involvement. Benefits to this

model are:

• Employment of staff specifically to support public involvement.

• Finances to resource public involvement (paying for transport etc.) and

incentives.

• Develop long term relationships between young people and researchers.

• Engage in reflective practice so continuously learning about involvement.

• Involve public during project bid development which is often hard to

finance. So researchers get a FREE session during bid development but

must cost group into bid for on-going sessions to ensure sustainability of

group.

• Video and more info: http://decipher.uk.net/public-involvement/young-

people/

www.decipher.uk.net

• 15-25 young people aged 14-21 from South Wales advise on public

health projects.

• Recruited through youth clubs and youth development projects.

• Meet on Saturdays at Cardiff University for 10 months of the year and

have a weekend residential. Do not meet May to middle of June due to

exams.

• Initial training about public health and research. On-going training as

needed/requested by young people.

• Since April 2012 had 28 meetings with an average of 9 attendees.

• Involved in 19 projects, several on two or more stages of the research

cycle.

• Worked with Welsh Government on an International Survey and NIHR as

reviewers.

• Co-authored 4 DECIPHer blogs, 1 article for INVOLVE and produced 3

films.

www.decipher.uk.net

Example Project – Exposure to alcohol advertising through social media

February 2013 (bid development free session) – 11 young people – issues with confidentiality; seemed a lot of hassle to upload software onto computer; incentives important.

June 2014 – 10 young people - Developing up the name and

mascot for the study – Digi Booze Ad; expressed how important the study recruitment materials would be.

October 2014 – 6 young people - helped to write and design

the consent forms, participant information booklet and leaflet. Currently these are with ethics committee.

Future work – Money to include more sessions with young people as

needed for example with recruitment and retention.

: our voices, our health

A Wellcome-funded project by NCB Research Centre with the Public Health Research Consortium, supporting 20 young people to contribute to UK public health research and policy

Worked with public health researchers, policymakers and research bodies

Produced research summaries and guidance

Spoke at events and conferences

Commissioned own research project

Organised a conference

Website with more info & evaluation (www.ncb.org.uk/PEAR)

Supporting young people’s involvement in an

adaptation and feasibility study of an intervention

for young people who misuse alcohol and drugs

Initial aim: set-up & run a national advisory group

(YP with experience of alcohol/drug services) to

work with researchers throughout the project

Best laid plans! – this model did not work

as we hoped so we have developed a

more flexible & localised model

YPAGs are not the only model

YP’s involvement has been extremely helpful and has

informed key elements of the intervention

Need YP with specific experience but this is a group who

can be difficult to access and to keep engaged

The support and engagement of services has been crucial

Traditional advisory group model in one location hasn’t

been effective or accessible, and also not been possible

for many YP to have l/t, on-going involvement

Flexible, local and YP-centred engagement has worked

better – starting where YP are if possible

But YP also want to meet the whole team and each other

Managing sensitive nature of topics discussed and

personal nature of the work.

What we’re learning

Challenging the myths – young people’s views

Research is too difficult for young people to understand

– give us training and support and think about how you can

make information clear and accessible. Then we can understand

a lot more!

Young people don’t have the skills and knowledge that adult

researchers have

- but adults can assume that they know what matters to young

people, and what questions to ask them. We have expertise in

being young people, and you may learn something from us!

My boss/ the person funding the research will like it

– don’t do it just because you think it looks good! Be clear about

the benefits for the research and us, and be really committed to

involving us properly

Planning involvementAre there particular groups of CYPFs you could or

should involve?

What type or model of involvement would be appropriate for your research/the CYPFs you wish to involve?

Is it possible to consult other CYPFs on your proposed plans?

And what stages of the research, and in what roles, could CYPFs be involved?

Is involvement adequately resourced (costs, staff time etc) or is the involvement planned possible within available resources?

Do you have sufficient involvement expertise within the team, or know where to access this?

More informationINVOLVE webpages on CYP’s involvement: http://www.invo.org.uk/find-out-more/involving-children-and-young-people/

+ Spring 2015 newsletter focused on CYP involvement

Young Health Participation: Blog about CYP’s participation in health services and research, including presentations, guest posts from young people and further information: www.younghealthparticipation.com

@louca_mai