NIHR standards for Patient and Public Involvement (PPI): Exploring why and how to develop and use them Central Commissioning Facility & INVOLVE 17th March 2016

Workshop purpose •  Why? Meaning and purpose of standards in PPI practice, to members of the NIHR community •  How? Development and potential application of a self assessment tool for initiatives such as NIHR Coordinating Centres, Infrastructure, Research Schools and others •  Next? Feedback and ideas from the workshop and how these will be progressed

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Workshop outline Section

Approach

Introduction and scene setting

•  Welcome and overview of the day

1. Meaning and purpose of Self Assessment and standards

•  Families First example approach •  Meaning and purpose of PPI standards for self assessment; group work

Lunch 2. How to develop and apply PPI standards and self assessment across NIHR? 3. Where next with this work?

•  Standards and self assessment examples •  Applying standards and self assessment to PPI: group work •  Ideas and feedback

Workshop summary and close

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Housekeeping Timings Phones Refreshments Lunch Facilities Expenses Photographs Central Commissioning Facility & INVOLVE

Discussing standards and self assessment together...... Could be challenging! •  Probably requires some pragmatism…and common sense •  …and sometimes compromise, we may need to ‘give ground’ in some areas.... •  Please respect the guidance on discussion • 

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Introduction Exercise •  Short introductions around your table •  Word association, everyone write; •  One word that you associate with 'standards' (yellow post it) •  One word you associate with 'self assessment‘ (orange post it )

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Natural Born Collaborators •  Diagnostic Evidence Co-operative •  Health Protection Research Unit •  Newcastle Biomedical Research Centre •  Newcastle Biomedical Research Unit •  School for Public Health Research •  Clinical Research Network Coordinating Centre • Trainees Coordinating Centre •  Patient Safety Translational Research Centre •  Mindtech Healthcare Technology Co-operative •  National Horizon Scanning Research and Intelligence Centre •  Surgical Reconstruction and Microbiology Research Centre •  Collaborations for Leadership in Applied Health Research and Care West Midlands • Cardiovascular Biomedical Research Unit • Health Protection Research Unit

•  Collaborations for Leadership in Applied Health Research and Care Oxford • School for Primary Care Research •  Biomedical Research Centre London •  Cancer Biomedical Research Centre •  Cardiovascular Healthcare Technology Co-operative •  Diagnostic Evidence Co-operative •  Great Ormond Street Biomedical Research Centre •  NIHR Office for Clinical Research Infrastructure •  Central Commissioning Facility •  Clinical Research Facilities for Experimental Medicine •  INVOLVE •  NIHR Evaluations, Trials and Studies Coordinating Centre •  Research Design Service South East

Medical Research Council Health Research Authority Royal College of Nursing Research Institute Bliss / Voluntary Sector Shared Learning Group

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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, Chief Medical Officer.

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.

http://www.nihr.ac.uk/ documents/aboutNIHR/NIHRPublications/Extra %20Mile2.pdf

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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-researchvaluesand-principles-framework/

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What shall we build?

“I'll tell you what freedom is to me: NO FEAR” Central Commissioning Facility & INVOLVE

Part 1: PPI standards and self assessment - learning from others •  David: short introduction to standards and self assessment •  Joy Shakespeare; Families First programme •  Meaning and purpose of PPI standards for self assessment; group work

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What are standards? 1. A level of quality or attainment. •  "their restaurant offers a high standard of service" •  synonyms: quality, level, grade, degree, worth, calibre, excellence 2. Something used as a measure, norm, or model in comparative evaluations. •  "the wages are low by today's standards" Central Commissioning Facility & INVOLVE

Self assessment definition(s) Continuing process through which people and organisations at all levels evaluate the effectiveness of their performance in all areas of responsibility, and determine what improvements are required.” •  Reflective process •  Ongoing basis •  Often benchmarked “

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Standards and self assessment: The Families First Approach Joy Shakespeare Head of Early Help Buckinghamshire County Council

Troubled Families: The national agenda •  “Troubled Families” •  Criteria and outcomes •  Payment by results funding •  Phase 1 (2012-15) and Phase 2 (2016-20)

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Families First: The local agenda •  Working with families across ALL of the issues they face •  Single assessment, single plan •  Lead family worker •  Using evidence based tools

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The Outcomes Star

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Assessing progress •  For families – engagement, assessment and distance travelled •  Audited, hard data for payment by results •  Feedback •  Triangulation for a richer picture

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Self Assessment •  •  •  •  • 

Using tools that work Engagement – the right people Assessment – where are we now? Setting criteria – a plan Measuring success - distance travelled

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Partnership STAR 1. Organisations' overall knowledge and understanding of Families First

2. Level of skills of staff using Families First framework

3. Number of people operating as Lead Professionals

5. The overall impact Families First has made to families

4. Active working in Partnership

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Group Exercise Each group to take a different question: 1.  2.  3.  4.  5. 

What would be the benefit (strength) of having PPI standards and self assessment? What are the drawbacks (weaknesses) of having PPI standards and self assessment? What could standards and self assessment do (opportunities) for PPI? Will PPI standards and self assessment be a threat to PPI? Choose either strength, weakness, opportunity or threat

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“SWOT Framework”

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Part 2: (PPI) Standards and self assessment •  Standards and self assessment – some PPI examples and more general •  Group work; compare and contrast these use gold or black stars to rate! •  Similarities and differences between groups?

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Principles, Purpose, Presence, Process, Impact (4PI) •  Not research focussed per se but North West London CLAHRC have been using............. •  Principles x 9 (e.g.) “To bear in mind at all times that our ultimate goal is to improve people’s mental health, wellbeing and recovery, a key part of which is to improve services and people’s experience of those services”

•  Purpose x 4 (e.g.) “The purpose of involvement needs to be clearly stated and agreed at the start, so that everyone connected with the involvement activity or organisation knows why service users and carers are being involved”

http://www.nsun.org.uk/assets/downloadableFiles/4PiNationalInvolvementStandardsFullReport20152.pdf

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Principles, Purpose, Presence, Process, Impact (4PI) •  Presence x 6 (e.g.) “A diversity of service users and carers should be involved at all levels and stages of an activity, organisation or project”

•  Process x 20 – Engagement, Communication, Support & Training, Practical sections (e.g. from Engagement) A range of different ways of being involved should be made available, in order to attract a wide range of service users and carers; this may mean adopting non-traditional approaches such as outreach or working with mediators from diverse communities

•  Impact x 7 (e.g.) “Policy and Planning: has the involvement of service users and/or carers influenced the development of policy or the planning of the project (at governance level)?” http://www.nsun.org.uk/assets/downloadableFiles/4PIinpractice-NorthWestLondon2.pdf

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'Log Frame' approach •  Impact is what you are aiming for (but may not be able to measure). •  Outcome is the higher level change you want to see happen, which is measurable. •  Outputs need to be linked to outcomes •  Activities are the least important. These are the things you do to achieve the outputs and the outcomes. Source: Logical Framework Analysis

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Log Frame for PPI? •  Impact; JLA research priorities influence research commissioning •  Outcome – JLA Top Ten list of co produced research priorities •  Outputs – inclusive prioritisation workshop, JLA survey results, a functional research partnership, engaged public and patients (steering group, surveys etc.) •  Activities – Set up and support of JLA Priority Setting Partnership, co producing surveys, analysing findings, checking for uncertainties •  http://www.jla.nihr.ac.uk/ Central Commissioning Facility & INVOLVE

Health Technology Assessment (HTA) International •  General HTA PPI process - summary •  Strategy outlining processes and responsibilities for those working together; designation of resources for effective involvement ; provision of training for HTA participants (public and professional); regular review of process and continuous improvement •  For individual HTA’s - summary •  Communication for a wide range of patients to participate fully in each HTA; clear timelines and advance notice of deadlines; identify a PPI staff member; PPI contributions documented and influence noted and reported; feedback for contributing patient organizations http://www.htai.org/interest-groups/patient-and-citizen-involvement/pcig-home/values-and-standards.html

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Business Excellence Model

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Business Excellence and PPI? PPI Leadership (public and professional?) People (seldom heard, diverse?) PPI Policy and strategy Partnership (research) and resources PPI Processes (survey, meetings, panels) People results (experiences of being involved from public and researcher perspectives) Customer results (added value to research process) Society results (added value for patient benefit) Key Performance results (achieve expected unexpected)

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Partnership STAR 1. Organisations' overall knowledge and understanding of Families First

2. Level of skills of staff using Families First framework

3. Number of people operating as Lead Professionals

5. The overall impact Families First has made to families

4. Active working in Partnership

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Principles 1.  Organisations overall knowledge and understanding of Families First programme 2.  Level of skills of staff using Families First framework 3.  % of people operating as Lead Professionals 4.  How far the organisation strategy and culture supports working in partnership on the ground 5.  The overall impact Families First is making to families Central Commissioning Facility & INVOLVE

Review of self assessed main scores Area

Average score

1. Overall knowledge and understanding of Families First programme

5.8 (highest 10; lowest 2)

2. Level of skills of staff using Families First framework

5.4 3.9

3. % of people operating as Lead Professionals 4. How far the organisation strategy and culture supports working in partnership on the ground 5. The overall impact Families First is making to families

(highest 9;lowest 1) (highest 8; lowest 1)

8.5

(highest 10; lowest 6)

5.5

(highest 9; lowest 1)

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Group work 2 •  Small groups compare and contrast examples •  Allocate your to the ones that you favour for taking PPI standards and self assessment forward in NIHR •  Use the for those that are less useful •  Facilitator to capture key points on flipchart •  Put up the results of your voting under your Group number on the wall

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Summary of afternoon work

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Standards and self assessment •  What would a collaborative and effective process for developing self assessment standards look like?

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Part 3: where next with the work? •  The outcomes and next steps from today's workshop Philippa Yeeles CCF and Martin Lodemore INVOLVE

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Workshop summary Final reflections on the day on the day and evaluation

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