Standards for Public Involvement in Research: Consultation 2017 Public Involvement Standards Development Partnership

Where are we now? •

Formed a partnership between England and Wales

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Gathered some existing examples of PPI Standards & talked to the originators

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Appraised 5 x examples of PPI standards (N. Ireland, NICE, Mental Health, Scottish Community, Health Technology Assessment International) we called these ‘pathfinders’

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Agreed 6 x draft standards + strapline (what), rationale (why) and key elements of the standard

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Mapped indicators from our pathfinders to each of our draft standards – some were more populated than others

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‘Road tested’ our draft standards (successful) and asked 100 + Public Involvement leads to suggest indicators (less successful!)

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Welcomed Scotland and N. Ireland as members of the partnership

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Standards Network – over 300 registered members. Sign up for information and updates.

Why do we need standards? • They provide a framework for improving the quality and consistency of public involvement in research.

Views from participants of an exploratory workshop in March 2016 • “A means of shared learning/examples of best practice so that we can learn from the success of others” • “I think what is needed is not just a list of values/standards but the means and tools to achieve these and improve”. • “Standards will help address minimum expectations of (PPI) across organisations” • “Build in a stretch element to the standard that takes organisations beyond the minimum”

Origins: Going the Extra Mile “Having reviewed the report's recommendations, I am content that the NIHR commits to taking them forward. This important work will be led by Simon [Denegri] with support provided by the INVOLVE Coordinating Centre. The NIHR community will work in partnership to deliver the recommendations of the report.” Response to ‘Going the Extra Mile’ Professor Dame Sally C Davies, Past CMO.

Recommendation 2 – Culture: The NIHR should commission the development of a set of values, principles and standards for public involvement. These must be co-produced with the public and other partners. They should be framed in such a way, and with a clear set of self-assessment criteria, so that organisations across the NIHR see their adoption as integral to their continuous improvement in public involvement. The achievements of the public, staff and researchers in promoting and advancing public involvement should be celebrated and acknowledged by the NIHR.

https://www.nihr.ac.uk/patien ts-andpublic/documents/Going-theExtra-Mile.pdf

Standards; building on firm foundations INVOLVE’s Public involvement in research: Values and principles framework • • •

2013, INVOLVE reviewed literature, publications and reports that looked at values, principles and standards for PPI in research 2014, INVOLVE Advisory Group adapted findings from the review into a draft framework to identify and reflect on good practice 2015, revised version of the framework to reflect extensive feedback from consultation. “It is intended that this framework is a living document that will continually evolve over time and be useful for reporting public involvement in research as well as for assessing the quality of involvement.”

http://www.invo.org.uk/posttypepublication/public-involvement-in-researchvalues-andprinciples-framework/

Public Involvement values & standards INVOLVE Values and Principles • • • • • •

Fairness of Opportunity Respect Support Transparency Responsive Accountable

Draft Public Involvement Standards • • • • • •

Inclusive Opportunities Working Together Support and Learning Communications Impact Governance

Stakeholders •

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Partners NIHR, Health and Care Research Wales , Scotland Chief Scientists Office and Public health Agency Northern Ireland ‘Pathfinders’ – those that have already developed values, principles and standards e.g. Scotland Community Development HTAI and NICE PI Standards network members please join PI Standards Workshop participants NIHR PI Leads Charities Universities and Schools of Research INVOLVE members and associates Involving People Network (Wales) Many more.......

Developing standards, the process so far....

The draft and revised standards and rationale

1. INCLUSIVE OPPORTUNITIES Original Standard

Revised Standard

• We provide clear, meaningful and accessible opportunities for involvement, for a wide range of people across all research.

• We offer public involvement opportunities that are accessible and that reach people and groups according to research needs.

Number of responses

Distribution of Scores for Inclusive Opportunities Indicators 150 100 50 0 0

1

2

3

4

5

6

7

8

9

Score given (0 disagree – 10 agree) Indicator 1.1

Indicator 1.2

Indicator 1.3

Indicator 1.4

Indicator 1.5

10

1. INCLUSIVE OPPORTUNITIES Original Rationale • We do this by embracing a broad spectrum of participation and involvement. This helps our research to be more fully informed, representative and relevant.

Revised Rationale • We want research to be informed by a diversity of patient, carer and public experience and insight so that it leads to treatments and services which reflect our needs.

2. WORKING TOGETHER Original Standard

Revised Standard

• We create and sustain respectful relationships, policies, practices and environments for effective working in research.

• We work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships.

Number of Responses

Distribution of Scores for Working Together Indicators 140 120 100 80 60 40 20 0 0

1

2

3

4

5

6

7

8

Score given (0 disagree – 10 agree) Indicator 2.1

Indicator 2.2

Indicator 2.3

Indicator 2.4

9

10

2. WORKING TOGETHER Original Rationale • We do this because we deliver better research when we work well together, towards shared goals, and having complimentary but different roles and responsibilities. Working this way becomes the norm.

Revised Rationale • We deliver better research when we work together on a common purpose. Different perspectives are respected and embraced through clearly defined roles and responsibilities.

3. SUPPORT AND LEARNING Original Standard

Revised Standard

• We ensure public involvement is undertaken with confidence and competence by everyone.

• We offer and promote support and learning that builds confidence and skills for public involvement in research.

Number of Responses

Distribution of Scores for Support and Learning Indicators 200 150 100 50 0

0

1

2

3

4

5

6

7

8

9

Score given (0 disagree – 10 agree) Indicator 3.1

Indicator 3.2

Indicator 3.3

Indicator 3.4

Indicator 3.5

10

3. SUPPORT AND LEARNING Original Rationale • We do this so that people have access to the appropriate support, learning and skills development that enables them to involve, and be involved effectively.

Revised Rationale • We seek to remove practical and social barriers that stop members of the public and research professionals from making the most of public involvement in research.

4. COMMUNICATIONS Revised Standard

Original Standard

• We use plain language for timely, two way and targeted communications, as part of involvement plans and activities.

• We provide clear and regular communications as part of all involvement plans and activities.

Number of Responses

Distribution of Scores for Communications Indicators 140 120 100 80 60 40 20 0 0

1

2

3

4

5

6

7

8

Score given (0 disagree – 10 agree) Indicator 4.1

Indicator 4.2

Indicator 4.3

Indicator 4.4

9

10

4. COMMUNICATIONS Original Rationale • We do this because full information exchange and effective communication helps build positive and strong relationships for meaningful involvement.

Revised Rationale • Plain language helps develop shared understanding in research. Free flow of information and adapting communication for particular needs helps keep the focus of involvement on improving research and outcomes.

5. IMPACT Revised Standard

Original Standard

• To drive improvement, we capture and share the difference that public involvement makes to research.

• We assess report and act on the impact of involving the public in research.

Number of Responses

Distribution of Scores for Impact Indicators 120 100 80 60 40 20 0 0

1

2

3

4

5

6

7

8

9

Score given (0 disagree – 10 agree) Indicator 5.1

Indicator 5.2

Indicator 5.3

Indicator 5.4

10

5. IMPACT Original Rationale • We want to capture the difference (positive or negative) public involvement makes to research, and ensure what we do is responsive.

Revised Rationale • We can learn from both positive and negative impacts of public involvement in research. By sharing this learning we can improve what we do.

6. GOVERNANCE Revised Standard

Original Standard • We ensure the community of interest voices are heard, valued, and included in decision making. We implement, report and are accountable for our decisions.

• We involve the public in our governance and leadership so that our decisions promote and protect the public interest.

Number of Responses

Distribution of Scores for Governance Indicators 200 150 100 50 0

0

1

2

3

4

5

6

7

Score given (0 disagree – 10 agree) Indicator 6.1

Indicator 6.2

Indicator 6.3

8

9

10

6. GOVERNANCE Original Rationale • Visibility of power sharing at the highest levels gives credibility and shows a commitment to public involvement in research. Sharing our frameworks for PI structure, management and compliance within research also shows transparency.

Revised Rationale • Public involvement in research needs visible leadership and clear lines of responsibility so that it is transparent and gains public trust.

Consultation next steps

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Revise the standards and indicators Publish analysis report Host drop-in session at INVOLVE Conference Identify pilot sites Start pilots Roll out across NIHR and partners

https://sites.google.com/nihr.ac.uk/pi-standards/standards-network

Thank you