National Standards for Public Involvement in Research: Consultation 2017 Guidance and slide set for use with consultation events and conversations, supplied by the Public Involvement Standards Development Partnership

Public Involvement Standards: Overview A partnership of; National Institute for Health Research (NIHR), Health and Care Research Wales, Chief Scientist Office, Scotland and the Northern Ireland Public Health Agency (PHA), are working jointly to develop a set of National Standards for Public Involvement in Research. The Standards are building on existing examples, experience and good practice from England, Scotland and Northern Ireland (we call these our ‘pathfinders’). A draft set of six core Standards have been drafted, each with Indicators. We wish to consult, receive and act on feedback on these. , with representatives from INVOLVE, NIHR Central Commissioning Facility, HCRW and members of the public.  Any PPI standards will need to be useful and applicable. 

Guidance for consultation Suggest that you have printed copies of the Draft Standards and the Survey. You can download them from here https://sites.google.com/nihr.ac.uk/pistandards/consultation/consultation-documents A group discussion could be led thus; Introduce the project using as many or as few slides as you like Explain that all the feedback from this session will be submitted via Survey Monkey. Discuss the Standards – this is the most important part of the consultation – the group need to find consensus on a scale between agree – don’t agree. Discuss the indicators - If you have time move onto the indicators and suggest that you agree a collective score between 1 – 10 (not helpful – very helpful). When you enter this into the survey you can move the slider until you reach your score for each indicator. Both have options for comments as well as scores

These slides cover; Overview including; partnership members, why we need the Standards, source material for the Standards, link between Standards and previous values and principles work, definitions of terms in the Standards and project flow chart. The Standards and consultation questions, comments and observations The indicators and consultation questions, comments and observations

Public Involvement Standards Development Partnership Established in July 2016, brings together professional and public representatives from; National Institute for Health Research (NIHR), Health and Care Research Wales, Chief Scientist Office, Scotland and Northern Ireland PHA. Supported by an independent consultant. For more information about the people involved https://sites.google.com/nihr.ac.uk/pi-standards/about-us

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 held in March 2016 “A means of shared learning/examples of best practice so that we can learn from the success of others”. “Build in a stretch element to the standard that takes organisations beyond the minimum” “Standards will help address minimum expectations of (PPI) across organisations” “This is a very important initiative. I appreciate ‘standards’ are not everyone’s cup of tea. But for organisations that are under constant – and I mean constant – pressure to demonstrate the impact of their public involvement work and by what measure, this work could be a ppi life-saver”. Simon Denegri

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. http://www.nihr.ac.uk/02-documents/about-NIHR/NIHR-Publications/Extra%20Mile2.pdf 

Standards; origins & building on firm foundations INVOLVE’s Public involvement in research, values and principles framework “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-and-principles-framework/ Health and Care Research Wales; Values and Principles “Embedded through all Health and Care Research Wales activity is our commitment to involving the public not only in our own work, but using our influence to champion the interests of the public in health and social care research in Wales more widely. Accordingly, all Health and Care Research Wales activity is underpinned by a set of core principles that shape our approach to public engagement and involvement” Core principles of engaging and involving the public https://www.healthandcareresearch.gov.wales/public-engagement-involvement-and-participation/

Public Involvement (PI) Values & PI Standards Draft Public Involvement Standards INVOLVE and Health and Care Research Wales Values and Principles Inclusive Opportunities Working Together Support and Learning Communications Impact  Governance Fairness of Opportunity/Diversity Respect  Support Transparency Responsive Accountable  High Quality/Meaningful

What do we mean by standards? Public Involvement Standard: a statement of good practice that describes one of six core elements in PI in research Public Involvement Indicator: a statement of good practice that describes what you need to demonstrate in order to meet the standard Illustration: different ways of demonstrating that you are meeting the Standard, three per indicator, covering different contexts e.g. organizational, project and individual perspectives Examples: real life examples that reflect indicators - not built yet...... what would you suggest?

Developing PI Standards, process so far.... Review existing public involvement standards and frameworks, extract content ‘Map’ this content to NIHR /HCRW Public Involvement Values and Principles Partnership members develop Standards and indicators from this ‘map’ Consult on the draft Standards and indicators with a wide range of people Agree Standards and indicators, add in illustrations and examples Launch Standards with use in pilot sites across England, Scotland and Wales We are here!

Community of interest Examples of our community of interest; Partners NIHR, Health and Care Research Wales, Scotland Chief Scientist Office and Northern Ireland PHA ‘Pathfinders’ – those that have already developed values, principles and standards e.g. Scotland Community Development and NICE PI Standards Network members PI Standards workshop participants NIHR Public Involvement leads Medical Research Charities Universities and Schools of Research INVOLVE members and associates Involving People Network (Wales) Many more.......

The Draft Standards Inclusive opportunities - We provide clear, meaningful and accessible opportunities for involvement, for a wide range of people across all research. Working together – We create and sustain respectful relationships, policies, practices and environments for effective working in research. Support & learning - We ensure public involvement is undertaken with confidence and competence by everyone. Communications - We provide clear and regular communications as part of all involvement plans and activities Impact - We assess report and act on the impact of involving the public in research. Governance - We ensure the community of interest voices are heard, valued, and included in decision making.

Survey link: https://www.surveymonkey.co.uk/r/PIStandards Consultation process Survey link: https://www.surveymonkey.co.uk/r/PIStandards   We are only collecting feedback via this route – individuals and/or groups are welcome to respond. For group responses we suggest that the discussion chair or other nominated person submits the response on their behalf. If you require assistance with any aspect of the survey please contact the NIHR PI team ccfppi@nihr.ac.uk Survey comprises; Introduction (read only) Completing the survey (read only) ‘About you’ (fill in information) Section 1: The Standards (rate statements and comments) Section 2: The indicators (rate statements and comments) Thanks and additional information (fill in information)

Consultation – Standards Please read the statements in Q’s 1 and 2 and mark how much you agree or disagree with them.  Question 1.‘The standards describe what good public involvement in research looks like'.   (0) Disagree --------------------------------------------------------------------------------Agree (10) Question 2. 'The standards provide a framework for improving the quality and consistency of public involvement in research'. (0) Disagree-------------------------------------------------------------------------------- Agree (10) Question 3. What difference, if any, will it make to you to have a set of national standards for public involvement in research? Comments Question 4. Whose responsibility is it to implement the standards? Comments

Consultation – Six Standards 1. Inclusive opportunities 2. Working together 3. Support & learning 4. Communications 5. Impact 6. Governance The partnership welcome any comments on each of the Standards We are not looking to make major changes to the overall Standards, but get the best working version by making sure they are clear and understandable, and that we are not missing anything obvious. We will consider all the feedback from this process.

Consultation – Indicators Please read the indicators and mark on the scale 'very helpful' to 'not helpful' the extent to which each indicator would help you or your organisation to understand how to meet or exceed the Standard. In the indicators ‘We' refers to whoever is using the Standards We welcome any comments on indicators

Consultation – indicators Standard 1. Inclusive opportunities - We provide clear, meaningful and accessible opportunities for involvement, for a wide range of people across all research. (0) Not helpful------------------------------------------------------------------------------- Very helpful (10) 1.1 We make information about opportunities for public involvement in research available, using different methods so that we reach relevant and interested people 1.2 We have a fair and transparent recruitment process for public involvement in research 1.3 We have choices and flexibility for people to take advantage of different opportunities for public involvement in research 1.4 We identify barriers to taking up public involvement in research and address them 1.5 We involve people affected by and interested in the research topic/issue at the earliest stage

Consultation indicators Standard 2. Working together – We create and sustain respectful relationships, policies, practices and environments for effective working in research. Not helpful (0)------------------------------------------------------------------------- Very helpful (10) 2.1 We ensure there is shared understanding of roles and responsibilities and expectations   2.2 We provide and use a range of ways of being involved in research 2.3 We develop public involvement plans (strategies) and activity together 2.4 We agree and uphold decision making that respects individual contributions

Consultation indicators  Standard 3. Support and Learning – we ensure public involvement is undertaken with confidence and competence by everyone. Not helpful (0)------------------------------------------------------------------------- Very helpful (10) 3.1 We offer a range of support to address identified needs (practical, emotional) 3.2 We have a clearly identifiable point of contact for information and support   3.3 We designate and monitor resources to ensure and support effective public involvement 3.4 We develop, deliver and monitor learning opportunities in partnership, for all involved 3.5 We actively learn from others, we build on what we have learned and share our learning

Consultation indicators Standard 4. Communications - We provide clear and regular communications as part of all involvement plans and activities Not helpful (0)-------------------------------------------------------------------------Very helpful (10) 4.1 We develop and maintain open dialogue with diverse groups of people/audiences 4.2 We gather feedback, we provide feedback, and we act on feedback 4.3 We are flexible in our communication methods to meet the needs of different audiences 4.4 We build a communications plan for our involvement activities  

Consultation indicators Standard 5. Impact - We assess, report and act on the impact of involving the public in research. Not helpful (0)-------------------------------------------------------------------------Very helpful (10) 5.1 We agree and describe our important and intended outcomes of PI activity before we start 5.2 We have processes for recording and monitoring important information as part of our PI activity 5.3 We involve the public in assessing the impact and outcomes of PI in research activity 5.4 We record and act on the results of our review of impact of PI activity

Consultation indicators Standard 6. Governance - We ensure the community of interest voices are heard, valued, and included in decision making. We implement, report and are accountable for our decisions. Not helpful (0)-------------------------------------------------------------------------Very helpful (10)   6.1 We have PI strategies and plans in place, with regular reporting and writing 6.2 Responsibility for PI is visible and accountable through our management structure 6.3 We allocate money and other resources for public involvement

Consultation indicators We welcome any comments on any of the indicators.........

Survey link: https://www.surveymonkey.co.uk/r/PIStandards Thank you – the partnership look forward to hearing your feedback! Please share the survey widely Survey link: https://www.surveymonkey.co.uk/r/PIStandards  Email: CCFPPI@nihr.ac.uk