Enhancing Public Involvement for Improved Health and Social Care Research

 
Better public involvement for better health and social care research
 
A slide set to support events, presentations and conversations
about the UK Standards for Public Involvement, supplied by
the UK Standards Development Partnership
                                    November 2019
 
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A set of UK standards designed to improve the quality and
consistency of public involvement in research
 
Developed over 3 years by a 4-nation partnership and tested by
40+ individuals, groups and organisations during a year-long
pilot programme.
 
The standards are for everyone doing health or social care
research. They can also be used in other contexts too.
 
They are a description of what good public involvement looks
like and are designed to support self-reflection and learning
 
Reflective questions accompany each Standard to encourage
users to think about their public involvement plans and actions
 
They provide guidance and reassurance for users working
towards achieving their own best practice.
 
Introducing the UK Standards for Public
Involvement in Research
 
The Standards
 
INCLUSIVE OPPORTUNITIES
 
WORKING TOGETHER
 
 
 
SUPPORT AND LEARNING
 
COMMUNICATIONS
 
IMPACT
 
GOVERNANCE
 
The Standards – more detail
 
INCLUSIVE OPPORTUNITIES
Offer public involvement opportunities that
are accessible and that reach people and
groups according to research needs
 
COMMUNICATIONS
Use plain language for well timed and
relevant communications, as part of
involvement plans and activities
 
SUPPORT AND LEARNING
Offer and promote support and learning
opportunities that build confidence and
skills for public involvement in research
 
WORKING TOGETHER
Work together in a way that values all
contributions, and that builds and sustains
mutually respectful and productive
relationships
 
GOVERNANCE
Involve the public in research management,
regulation, leadership and decision making
 
IMPACT
Seek improvement, by identifying and sharing
the difference that public involvement makes to
research
 
 
 
What the Standards represent
 
 
Consensus on six important ‘values-based’ areas to improve the quality of
public involvement in research
Reflective questions for each Standard to encourage users to think about
their public involvement plans and actions
Guidance and reassurance for users working towards achieving 
their own
best practice
The natural progression from previous work by National Institute for
Health Research (NIHR) and Health Care Research Wales on values and
principles in public involvement in research.
Informed by Northern Ireland Public and Personal Involvement Standards
and the Scottish Community Engagement Standards, amongst others.
 
Who the Standards are for
 
The standards are for people and organisations that do research, support
research and do public involvement to improve research.
 
 
For example:
 
 
Researchers
 and 
research organisations
 can use the standards to assess their
plans and activities for public involvement and identify how to improve
 
Public Involvement managers and facilitators 
can consider the standards a
framework to reflect on and plan their activities
 
Members of the public and community groups
 can use the standards to assess the
strengths and weaknesses of their experience of involvement in research.
 
How the Standards can help
 
 
Improving public involvement practice - providing examples of
good practice
 
Supporting leadership and accountability for involvement within
research organisations – ‘Public involvement is everyone’s job’
 
No single way of using the standards - how they are used will be
influenced by many issues, such as the purpose of involvement
and the amount of resources (money, people, skills) available.
 
 
 
Putting the standards into practice –
piloting phase 2018/19
 
Standards Pilots 2018/19 - Summary
 
40 organisations, groups and individuals (Pilots) across the UK – a broad range of
experience, funding for involvement and research focus.
Mix of formal structured ‘test beds’ (10) and informal ‘freestyle projects’ (30)
Applied the Standards for up to a year and shared progress with the Partnership
Most ‘popular’ Standards: Inclusive Opportunities, Working Together and
Support and Learning – less popular and more challenging were Impact and
Governance
Most of the pilots found the standards useful - they had improved or started to
improve practice
*
Feedback and Improvements to the standards were suggested & implemented
 
Standards Pilots: How the Standards were used
as a framework for public involvement supporting
reflective practice and plans for future activities;
as an audit /mapping tool identify gaps and areas for
improvement; and
for support and reassurance that they were working
towards achieving best practice
 as a framework for public involvement supporting
reflective practice and plans for future activities;
as an audit /mapping tool identify gaps and areas for
improvement; and
for support and reassurance that they were working
towards achieving best practice
 
as a framework for public involvement supporting
reflective practice and plans for future activities
 
as an audit /mapping tool identify gaps and areas
for improvement
 
as a way of prioritising involvement activity, e.g.
identifying 3 areas of focus that are achievable in a
timeframe
 
to harmonise public involvement processes across
different settings
 
by ‘applying’ a Standard such as Communication
and reviewing all public involvement information
used in the organisation
 
What people said
 
 
GOVERNANCE
 
“ A skills audit of public contributors and other members of  governance groups
can be useful, both to play to people’s strengths and assets and to make skills
and value more transparent to the group”
“It’s important to have buy-in from senior management to ensure involvement is
properly resourced and PPI Teams have the time to organise things.”
 
COMMUNICATIONS:
 
“We focused on making all our communications accessible. This one standard
crossed over to other standards. It completely changed our thinking”
“We took additional time to prepare resources appropriate to different groups
to avoid tokenism”
 
INCLUSIVE OPPORTUNITIES:
“This standard made us think more broadly. Previously we had variable involvement,
no clear role descriptions or expenses policies. We began to make small changes –
accepting what was realistic given our limited resources.”
“Diversity is a weakness in PPI. The standards help to highlight this along with other
weaknesses.”
 
WORKING TOGETHER:
 
“Standards gave us a framework to stand back, think clearly and work with
researchers, members of the public and others to develop an action plan to
support joint working”
“We worked together with our public contributors to create and develop new
resources and activities to improve public involvement”
 
SUPPORT AND LEARNING : 
What people said…
“The standards have acted as a best practice guide, informing our public
involvement activity. Referring to them has been reassuring.”
“We feel better equipped to advise colleagues about involving the public in
research now that they have a resource that they can refer to reflect on what
they are doing and identify ways they can improve”
 
IMPACT:
 
What people said…
 “We approached this by carrying out an assessment from the patients’
perspective of their experience of being involved in implementing the standards
focusing on what was good/ not so good/ what should happen next.”
“Putting the Standards into practice has resulted in some changes to our practice
…but more importantly, enabled reflection on our practice and our ambitions to
improve”
 
Standards Pilots: Challenges & learning
 
“We feel that it is not appropriate that all the
Standards are applied to all research projects in
the same way as they might be applied to a
research organisation.”
 
“Involvement is already squeezed so to then
implement the standards was extra and
required everyone to be generous with their
time.”
 
“We need to be careful that the standards are
not seen as a stick to beat people with. …
Encourage people to believe in what they’re
doing – not see PPI and the standards as a tick
box exercise.”
 
Pie chart illustrating pilot responses to the survey question: 
‘In general, how have
the standard(s) improved your/your organisation's practice?’ 
(N=40)
 
Standards Pilots: Overall experience & feedback
 
Bar Chart representing pilot responses to the question:
 
‘Of the standards you used, please
rate how useful you found each of them.’
 
(N=40)
 
Key messages for users
 
1.
Don’t be afraid to use the standards – experiment with how
they can apply to your research/project/context.
 
2.
Look for and use existing resources/materials – there are many
online public involvement resources already available.
 
3.
Seek support and advice from your organisation’s public
involvement contact/team
 
Background and development - a journey
 
The journey so far…
 
November 2019
 
Standards community
Involving People
Network, Wales
Universities
Members of
the public
Charities
Over 40 ‘Pilots’
2018 – 19
Public involvement
practitioners
 
….and many more
Health &
Social Care
Administrations
Standards
Network
INVOLVE
members and
associates
Original
standards
‘Pathfinders
Industry
 
The full Standards and Reflective
Questions
 
Research to be informed by a diversity of public experience and insight, so that it
leads to treatments and services which reflect these needs
 
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Are people affected by and interested in the research involved from the earliest stages?
Have barriers to involvement, such as payment for time or accessible locations for meetings been
identified and addressed?
How is information about opportunities shared, and does it appeal to different communities?
Are there fair and transparent processes for involving the public in research, and do they reflect
equality and diversity duties?
 
Is there choice and flexibility in opportunities offered to the public?
 
Public involvement in research governance can help research be more
transparent and gain public trust
 
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Are public voices heard, valued and respected in decision making?
Are public involvement plans in place that are regularly monitored, reviewed and reported on?
Is there visible and accountable responsibility for public involvement throughout the organisation?
Are realistic resources (including money, staff, time) allocated for public involvement?
Is the privacy of personal information protected by collecting and using it in a suitable way?
 
Public involvement in research is better when people work together towards a
common purpose, and different perspectives are respected
 
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Has the purpose of public involvement been jointly defined and recorded?
Have the practical requirements and arrangements for working together been addressed?
Have all the potential different ways of working together been explored, and have these plans and
activities been developed together?
Is there is a shared understanding of roles, responsibilities and expectations of public involvement?
Have individuals’ influence, ideas and contributions’ been recognised and addressed?
 
Remove practical and social barriers that stop members of the public and research
professionals from making the most of public involvement in research.
 
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Is there a range of support to address identified needs?
Have specific resources been designated to support learning and development opportunities for both
the public, researchers, and staff?
Do the public know where to go for information and support about public involvement?
Is there a culture of learning by doing, building on and sharing that learning for researchers, staff and
the public?
 
Understand the changes, benefits and learning gained from the insights and
experiences of patients, carers and the public
 
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Are the public involved in deciding what the assessment of impact should focus on, and the approach
to take?
 
Is it clear what information to collect to help assess impact, including who has been involved and how?
 
Are there processes in place to help reflect on public involvement?
Are the changes, benefits and learning resulting from public involvement acted on?
 
Communicate with a wider audience about public involvement and research,
using a broad range of approaches that are accessible and appealing
 
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Has a communications plan been developed for involvement activities?
Are the needs of different people being met through inclusive and flexible communication methods?
Are processes in place to offer, gather, act on and share feedback with the public?
 
Are you sharing your public involvement learning and achievements, good and bad?
 
The Standards
 
INCLUSIVE OPPORTUNITIES:
 
Offer public involvement opportunities that are
accessible and that reach people and groups according to research needs.
WORKING TOGETHER: 
Working together in a way that values all contributions, and
that builds and sustains mutually respectful and productive relationships.
SUPPORT AND LEARNING:
 
Offer and promote support and learning opportunities
that build confidence and skills for public involvement in research.
COMMUNICATIONS: 
Use plain language for well-timed and relevant
communications as part of involvement plans and activities.
IMPACT: 
Seek improvement by identifying and sharing the difference that public
involvement makes to research.
GOVERNANCE: 
Involve the public in research management, regulation, leadership
and decision making.
 
Resources and support – where to go
 
UK Standards for Public Involvement website:
https://sites.google.com/nihr.ac.uk/pi-standards/home
 
INVOLVE website: 
https://www.invo.org.uk/
 
Learning for Involvement website:
http://learningforinvolvement.org.uk/
 
Health Research Authority – Public Involvement:
https://www.hra.nhs.uk/planning-and-improving-research/best-
practice/public-involvement/
 
Acknowledgements
 
The UK Public Involvement Standards Development Partnership group
would like to thank everyone who gave their time and input to the
development of the standards.
 
A special thank you to the pilot implementation teams across the UK, who
used the standards for a year and shared their experiences.
 
Thanks to everyone that took part in the initial workshop, the consultation,
and shared their views via Social Media.
 
We also thank; Maryrose Tarpey for the analysis and reporting of pilot data
(2019); The North East Research Design Service and their Public Group for
supporting analysis and reporting of public consultation (2017) and
members of the Standards Network 2017 – 2019.
 
#
U
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P
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a
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@NIHRINVOLVE
, 
@publichealthni
, 
@CSO_Scotland
, 
@ResearchWales
 
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Thank you & 
join the conversation
!
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Explore the UK Standards for Public Involvement in Research, a comprehensive set of guidelines developed to enhance the quality and consistency of public engagement in health and social care research. These standards, encompassing areas like working together, support and learning, communications, governance, and impact, aim to promote inclusive opportunities and collaboration for a more impactful research environment. Foster reflective practices and encourage better engagement by integrating these standards into research activities.


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  1. Better public involvement for better health and social care research A slide set to support events, presentations and conversations about the UK Standards for Public Involvement, supplied by the UK Standards Development Partnership November 2019

  2. UK Standards for Public Involvement Better public involvement for better health and social care research A set of UK standards designed to improve the quality and consistency of public involvement in research Developed over 3 years by a 4-nation partnership and tested by 40+ individuals, groups and organisations during a year-long pilot programme. The standards are for everyone doing health or social care research. They can also be used in other contexts too. They are a description of what good public involvement looks like and are designed to support self-reflection and learning Reflective questions accompany each Standard to encourage users to think about their public involvement plans and actions They provide guidance and reassurance for users working towards achieving their own best practice.

  3. Introducing the UK Standards for Public Involvement in Research

  4. The Standards INCLUSIVE OPPORTUNITIES WORKING TOGETHER SUPPORT AND LEARNING COMMUNICATIONS IMPACT GOVERNANCE

  5. The Standards more detail WORKING TOGETHER Work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships INCLUSIVE OPPORTUNITIES Offer public involvement opportunities that are accessible and that reach people and groups according to research needs COMMUNICATIONS Use plain language for well timed and relevant communications, as part of involvement plans and activities GOVERNANCE Involve the public in research management, regulation, leadership and decision making SUPPORT AND LEARNING Offer and promote support and learning opportunities that build confidence and skills for public involvement in research IMPACT Seek improvement, by identifying and sharing the difference that public involvement makes to research

  6. What the Standards represent Consensus on six important values-based areas to improve the quality of public involvement in research Reflective questions for each Standard to encourage users to think about their public involvement plans and actions Guidance and reassurance for users working towards achieving their own best practice The natural progression from previous work by National Institute for Health Research (NIHR) and Health Care Research Wales on values and principles in public involvement in research. Informed by Northern Ireland Public and Personal Involvement Standards and the Scottish Community Engagement Standards, amongst others.

  7. Who the Standards are for The standards are for people and organisations that do research, support research and do public involvement to improve research. For example: Researchers and research organisations can use the standards to assess their plans and activities for public involvement and identify how to improve Public Involvement managers and facilitators can consider the standards a framework to reflect on and plan their activities Members of the public and community groups can use the standards to assess the strengths and weaknesses of their experience of involvement in research.

  8. How the Standards can help Improving public involvement practice - providing examples of good practice Supporting leadership and accountability for involvement within research organisations Public involvement is everyone s job No single way of using the standards - how they are used will be influenced by many issues, such as the purpose of involvement and the amount of resources (money, people, skills) available.

  9. Putting the standards into practice piloting phase 2018/19

  10. Standards Pilots 2018/19 - Summary 40 organisations, groups and individuals (Pilots) across the UK a broad range of experience, funding for involvement and research focus. Mix of formal structured test beds (10) and informal freestyle projects (30) Applied the Standards for up to a year and shared progress with the Partnership Most popular Standards: Inclusive Opportunities, Working Together and Support and Learning less popular and more challenging were Impact and Governance Most of the pilots found the standards useful - they had improved or started to improve practice* Feedback and Improvements to the standards were suggested & implemented

  11. Standards Pilots: How the Standards were used as a framework for public involvement supporting reflective practice and plans for future activities as a framework for public involvement supporting reflective practice and plans for future activities; as an audit /mapping tool identify gaps and areas for improvement; and for support and reassurance that they were working towards achieving best practice as a framework for public involvement supporting reflective practice and plans for future activities; as an audit /mapping tool identify gaps and areas for improvement; and for support and reassurance that they were working towards achieving best practice by applying a Standard such as Communication and reviewing all public involvement information used in the organisation as an audit /mapping tool identify gaps and areas for improvement as a way of prioritising involvement activity, e.g. identifying 3 areas of focus that are achievable in a timeframe to harmonise public involvement processes across different settings

  12. What people said GOVERNANCE A skills audit of public contributors and other members of governance groups can be useful, both to play to people s strengths and assets and to make skills and value more transparent to the group It s important to have buy-in from senior management to ensure involvement is properly resourced and PPI Teams have the time to organise things. COMMUNICATIONS: We focused on making all our communications accessible. This one standard crossed over to other standards. It completely changed our thinking We took additional time to prepare resources appropriate to different groups to avoid tokenism

  13. INCLUSIVE OPPORTUNITIES: This standard made us think more broadly. Previously we had variable involvement, no clear role descriptions or expenses policies. We began to make small changes accepting what was realistic given our limited resources. Diversity is a weakness in PPI. The standards help to highlight this along with other weaknesses. WORKING TOGETHER: Standards gave us a framework to stand back, think clearly and work with researchers, members of the public and others to develop an action plan to support joint working We worked together with our public contributors to create and develop new resources and activities to improve public involvement

  14. SUPPORT AND LEARNING : What people said The standards have acted as a best practice guide, informing our public involvement activity. Referring to them has been reassuring. We feel better equipped to advise colleagues about involving the public in research now that they have a resource that they can refer to reflect on what they are doing and identify ways they can improve IMPACT:What people said We approached this by carrying out an assessment from the patients perspective of their experience of being involved in implementing the standards focusing on what was good/ not so good/ what should happen next. Putting the Standards into practice has resulted in some changes to our practice but more importantly, enabled reflection on our practice and our ambitions to improve

  15. Standards Pilots: Challenges & learning Involvement is already squeezed so to then implement the standards was extra and required everyone to be generous with their time. We need to be careful that the standards are not seen as a stick to beat people with. Encourage people to believe in what they re doing not see PPI and the standards as a tick box exercise. We feel that it is not appropriate that all the Standards are applied to all research projects in the same way as they might be applied to a research organisation.

  16. Standards Pilots: Overall experience & feedback How useful the pilot sites found each of the Standards Really Useful Somewhat Useful Neither Useful or not useful Not at all useful Not Applicable Improvement effect of the Standards during the piloting phase (2018-19) 25 22 Number of pilot sites 19 19 20 18 18 17 17 17 16 15 15 2% 15 13 They haven t improved practice Created ambition to improve Started to improve Improved everyday practice Don't know 2% 10 4 3 3 5 2 2 2 2 24% 1 1 1 1 0 0 0 0 0 0 0 0 39% INCLUSIVE OPPORTUNITIES WORKING TOGETHER SUPPORT & LEARNING COMMUNICATION IMPACT GOVERNANCE Bar Chart representing pilot responses to the question: Of the standards you used, please rate how useful you found each of them. (N=40) 33% Pie chart illustrating pilot responses to the survey question: In general, how have the standard(s) improved your/your organisation's practice? (N=40)

  17. Key messages for users 1. Don t be afraid to use the standards experiment with how they can apply to your research/project/context. 2. Look for and use existing resources/materials there are many online public involvement resources already available. 3. Seek support and advice from your organisation s public involvement contact/team

  18. Background and development - a journey

  19. The journey so far November 2019 2013-15 2016/17 2017/18 2018/19 2019/20 2015/16 2020/21 onwards: Supporting uptake and implementation Identified need why standards? Establish 4- nations partnership, draft standards Establish and maintain buy- in / stakeholder engagement Public Test & evaluate revised standards (pilot phase) Release final set of standards - and roll out consultation, revision of standards

  20. Standards community Over 40 Pilots 2018 19 Standards Network Charities Involving People Network, Wales DEVELOPMENT PARTNERSHIP Industry Members of the public Universities INVOLVE members and associates Health & Social Care Administrations Original standards Pathfinders Public involvement practitioners .and many more

  21. The full Standards and Reflective Questions

  22. INCLUSIVE OPPORTUNITIES Offer public involvement opportunities that are accessible and that reach people and groups according to research needs Research to be informed by a diversity of public experience and insight, so that it leads to treatments and services which reflect these needs The questions below may help you reflect on and decide if you meet the standard: Are people affected by and interested in the research involved from the earliest stages? Have barriers to involvement, such as payment for time or accessible locations for meetings been identified and addressed? How is information about opportunities shared, and does it appeal to different communities? Are there fair and transparent processes for involving the public in research, and do they reflect equality and diversity duties? Is there choice and flexibility in opportunities offered to the public?

  23. GOVERNANCE Involve the public in research management, regulation, leadership and decision making Public involvement in research governance can help research be more transparent and gain public trust The questions below may help you reflect on and decide if you meet the standard: Are public voices heard, valued and respected in decision making? Are public involvement plans in place that are regularly monitored, reviewed and reported on? Is there visible and accountable responsibility for public involvement throughout the organisation? Are realistic resources (including money, staff, time) allocated for public involvement? Is the privacy of personal information protected by collecting and using it in a suitable way?

  24. WORKING TOGETHER Work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships Public involvement in research is better when people work together towards a common purpose, and different perspectives are respected The questions below may help you reflect on and decide if you meet the standard: Has the purpose of public involvement been jointly defined and recorded? Have the practical requirements and arrangements for working together been addressed? Have all the potential different ways of working together been explored, and have these plans and activities been developed together? Is there is a shared understanding of roles, responsibilities and expectations of public involvement? Have individuals influence, ideas and contributions been recognised and addressed?

  25. SUPPORT AND LEARNING Offer and promote support and learning opportunities that build confidence and skills for public involvement in research. Remove practical and social barriers that stop members of the public and research professionals from making the most of public involvement in research. The questions below may help you reflect on and decide if you meet the standard: Is there a range of support to address identified needs? Have specific resources been designated to support learning and development opportunities for both the public, researchers, and staff? Do the public know where to go for information and support about public involvement? Is there a culture of learning by doing, building on and sharing that learning for researchers, staff and the public?

  26. IMPACT Seek improvement by identifying and sharing the difference that public involvement makes to research Understand the changes, benefits and learning gained from the insights and experiences of patients, carers and the public The questions below may help you reflect on and decide if you meet the standard: Are the public involved in deciding what the assessment of impact should focus on, and the approach to take? Is it clear what information to collect to help assess impact, including who has been involved and how? Are there processes in place to help reflect on public involvement? Are the changes, benefits and learning resulting from public involvement acted on?

  27. COMMUNICATIONS Use plain language for well-timed and relevant communications, as part of involvement plans and activities Communicate with a wider audience about public involvement and research, using a broad range of approaches that are accessible and appealing The questions below may help you reflect on and decide if you meet the standard: Has a communications plan been developed for involvement activities? Are the needs of different people being met through inclusive and flexible communication methods? Are processes in place to offer, gather, act on and share feedback with the public? Are you sharing your public involvement learning and achievements, good and bad?

  28. The Standards INCLUSIVE OPPORTUNITIES: Offer public involvement opportunities that are accessible and that reach people and groups according to research needs. WORKING TOGETHER: Working together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships. SUPPORT AND LEARNING: Offer and promote support and learning opportunities that build confidence and skills for public involvement in research. COMMUNICATIONS: Use plain language for well-timed and relevant communications as part of involvement plans and activities. IMPACT: Seek improvement by identifying and sharing the difference that public involvement makes to research. GOVERNANCE: Involve the public in research management, regulation, leadership and decision making.

  29. Resources and support where to go UK Standards for Public Involvement website: https://sites.google.com/nihr.ac.uk/pi-standards/home INVOLVE website: https://www.invo.org.uk/ Learning for Involvement website: http://learningforinvolvement.org.uk/ Health Research Authority Public Involvement: https://www.hra.nhs.uk/planning-and-improving-research/best- practice/public-involvement/

  30. Acknowledgements The UK Public Involvement Standards Development Partnership group would like to thank everyone who gave their time and input to the development of the standards. A special thank you to the pilot implementation teams across the UK, who used the standards for a year and shared their experiences. Thanks to everyone that took part in the initial workshop, the consultation, and shared their views via Social Media. We also thank; Maryrose Tarpey for the analysis and reporting of pilot data (2019); The North East Research Design Service and their Public Group for supporting analysis and reporting of public consultation (2017) and members of the Standards Network 2017 2019.

  31. Thank you & join the conversation! #UKPIStandards @NIHRINVOLVE, @publichealthni, @CSO_Scotland, @ResearchWales https://sites.google.com/nihr.ac.uk/pi-standards/home

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