A guide to involving patients, public and stakeholders March 2024
Purpose of the toolkit
This toolkit is a practical guide to help colleagues across the North East and North Cumbria Integrated Care Board (NENC ICB) involve people with the work they are doing. The easy-to-follow guide includes advice, techniques and templates that can be used with a variety of audiences and topics to engage meaningfully and improve the quality of services.
Engaging with people and communities is a key principle that underpins the NHS. As an NHS organisation we have a legal duty to involve patients and stakeholders in our work under the Health and Social Care Act 2022.
All colleagues should familiarise themselves with the content of the toolkit and follow the processes to engage and keep the involvement team informed.
Involvement is a statutory responsibility for the NHS, and continuous community engagement is a best practice approach already seen across our Integrated Care System (ICS).
It should be accessible and inclusive, and carried out at organisational and community level – through patient experience and organisational engagement with stakeholders and the community, to support, inform and drive improvement as well as identifying concerns and issues early.
It should be carried out where people live - place / neighbourhood - with stakeholders and the community, to ensure a broader picture of how services are working, promote collaboration and co-production and service improvement.
It should happen at sub-regional Integrated Care Partnership (ICP) as well as ICS level, to ensure and support the community voice in the shaping of priorities and service development, and ensure that the themes, concerns, and ideas discussed at a local level are visible at decision-making level.
ICS involvement and engagement should complement the existing work around patient experience, community involvement and co-production.
Communication – providing and sharing information and updates on various issues.
Engagement – is a two-way process and gives people an opportunity to contribute to decision-making and service delivery and can be done in many ways.
Involvement – ensures people can be more involved with service improvement and change, given more information and access to NHS processes where their contribution and input is valued. Public involvement in commissioning is about enabling people to voice their views, needs and wishes, and to contribute to plans, proposals, and decisions about services.
Co-production – there are many definitions of co-production, but we mean involving people early, sharing our problems, challenges, and working together to help develop the solutions together. A co-production toolkit is available in tools and templates.
We have learned the importance of early involvement, clarity about the scope and the benefit of alternative views and energy in finding innovative solutions.
Lived experience – is where someone who has recent experience of a service can (and is supported to) share that experience with the intention of making changes and improvements.
Consultation – is a formal process used in service change and has some statutory (and legal requirements). In the NHS, the word ‘consultation’ has formal connotations, and this isn’t the same for local government colleagues. The process for this is rigorous and we are expected to engage thoroughly before going to public consultation and while developing options. Options for consultation must be developed through listening. This is known as pre-consultation engagement. This stage runs alongside modelling of options and the development of a business case.
A case for change will start the pre-consultation phase and engagement on this case for change will continue as research and modelling are being carried out.
Criteria to determine options to consult on will be developed and these should be discussed with interested parties. These will include hurdle criteria and evaluation criteria.
The Consultation Institutedefines consultation as: “The dynamic process of dialogue between individuals or groups, based upon a genuine exchange of views, with the clear objective of influencing decisions, policies or programmes of action.”
We need local patients and communities to be involved in all parts of the commissioning cycle to ensure we make the right decisions when it comes to the future of the healthcare services they use.
Formal public consultation takes engagement a step further with a legal requirement to involve local people in substantive service change. Before we get to the stage of holding a formal public consultation, we carry out what is known as pre-consultation engagement. This helps to shape our thinking and development of plans which we can then take to consultation.
The ICB can decide to formally consult at any time as part of its decision-making process. The criteria for deciding whether we engage or run a formal public consultation is usually determined by the degree of change being planned. The following considerations should be made to determine whether change is considerable enough to consider formal public consultation:
Are we withdrawing services completely?
Are we moving services to another location which could cause considerable disruption for service users?
Will a particular cohort be unfairly disadvantaged by our plans?
We are legally required to carry out formal public consultations if there is going to be substantial change to NHS services. We work closely with our local Healthwatch organisations and Overview Scrutiny Committees (HOSCs) and Local Authorities (LAs) to determine when formal public consultation is needed, using the expertise within the involvement team. We are also members of the Consultation Institute and will seek advice from experts where needed.
Involving and engaging partners, stakeholders and the public in planning, design and delivery of our services is a statutory responsibility for the NHS. Wherever, and whenever possible, we will include meaningful involvement as part of our work. We want people to help us design, develop and improve services by sharing their views and experiences.
The people we listen to and involve need to reflect the communities we serve. We know that many people are often not heard in our system. To ensure we meet the needs of all people, we will work creatively and in accessible ways to reach those whose voices, views and opinions are too often ignored or not sought.
There are many benefits of involving people with the work we are doing, such as…
It helps to improve two-way communication between patients and staff.
We may learn something about a service you hadn't
It helps to develop a better understanding about different health services.
Improves decision making by considering different views.
Members of the public can have a say and help develop health-care services.
Feedback can contribute to improving the services we commission.
It is also best practice to involve people. It will help us to understand what works well, what could work better, and in an ideal world, how services should be provided. It is important we do not make these assumptions but demonstrate how we have listened.
This guide and its templates are support tools for all projects and will help the ICB workforce involve local people in the planning and delivery of health and care services.
It includes two important documents which should be completed at the start and end of projects. This will enable the involvement team to advise and guide colleagues and to make sure the ICB learns from insights we gather and uses them in decision making.
The ICB has a legal duty to involve people under the Health and Care Act 2022 and this may be through communication, engagement activities, or formal consultation. This section includes information from the NHS Act 2006, The NHS Constitution and about the Gunning Principles, which explains the legal duty to involve.
Section 242 and Section 244 of the consolidated NHS Act 2006 places a duty on NHS trusts and organisations to make arrangements to involve patients and the public in service planning and operation, and in the development of proposals for changes.
The relevant clause in the Act for ICBs is S.14Z45 which states that the ICBs must make arrangements to secure that individuals to whom the services are being or may be provided, and their carers and representatives (if any), are involved (whether by being consulted or provided with information or in other ways): -
in the planning of the commissioning arrangements by the integrated care board,
in the development and consideration of proposals by the integrated care board for changes in the commissioning arrangements where the implementation of the proposals would have an impact on—
the manner in which the services are delivered to the individuals (at the point when the service is received by them), or
the range of health services available to them, and
in decisions of the integrated care board affecting the operation of the commissioning arrangements where the implementation of the decisions would (if made) have such an impact.
The Health and Care Act 2022 includes new powers for the Secretary of State relating to service reconfiguration.
These are:
the power to 'call-in' change proposals;
the duty for commissioners to notify SoS of substantial reconfigurations and
an obligation to provider Minister with information to support exercise of the powers.
These replace the existing HOSC referral power in relation to service changes.
Call in powers
From 31 January 2024:
Anybody can make a ‘call-in’ request to the SoS in relation to any service change scheme at any stage of the reconfiguration process.
The local authority HOSC will no longer be able to make a new referral to SoS under the 2013 regulations but can make a call-in request to the SoS.
Call-in requests expected to be made in exceptional circumstances and where local resolution has been attempted first.
To inform whether or not a proposal should be called-in, the SoS could consider the following:
There are concerns with the process followed by commissioner/provider (consultation process, options devpt)
A decision has been made and there are concerns that this is not in the best interests of local health services
Whether or not the reconfiguration is substantial
The regional and national significance of the reconfiguration and the impact on quality, safety or effectiveness
The SoS can impose a range of interventions from supporting the proposals, mandating modifications to process or proposals or re- taking a decision him/herself.
Notification duties and process
What is notifiable?
Schemes are notifiable at the point the statutory requirement to consult with a HOSC/JHOSC applies – when there is a substantial variation/development under consideration.
HOSC/JHOSC view on substantial/notifiable nature is part of reporting process.
Risk-based approach to notification is advised due to correlation with call-in process.
Temporary changes are not notifiable – unless proposals to make temporary change permanent emerge.
Notification process
Please contact a member of the involvement team who will support the lead commissioner with the completion of a notification pro-forma, following appropriate ICB/NHSE governance routes before submitting to the Department of Health and Social Care.
The NHS Constitution sets out the commitments and responsibilities that the public, patients, and staff owe to one another to ensure that the NHS operates fairly and effectively. All NHS bodies and private and third sector providers supplying NHS services are required by law to take account of the constitution in their decisions and actions.
The Gunning Principles are a set of four rules for public consultation that were proposed in 1985, which if followed, are designed to make consultation fair and a worthwhile exercise:
that consultation must be at a time when proposals are still at a formative stage;
that the proposer must give sufficient reasons for any proposal to permit of intelligent consideration and response;
that adequate time is given for consideration and response; and
that the product of consultation is conscientiously considered when finalising the decision.
The Gunning principles only apply formally to consultation, though they are good principles to apply to any involvement situation. It is important to note: It is the process that is undertaken that determines whether a consultation has been robust (or not) and followed the legal obligations, not the decision of the outcome from the consultation.
In addition to the legal duty to involve, there is the need to consider equalities. The Equality Act 2010 gives us a duty to consider the need to:
Eliminate discrimination, harassment, and victimisation.
Advance equality of opportunity.
Foster good relations between different parts of the community.
ICBs are also under a separate statutory duty to have regard to the need to reduce health inequalities of access to health services and the outcomes achieved (sections 13G and 14Z35 of the National Health Service Act 2006, respectively). By understanding the needs of people experiencing health inequalities, services can work with them to reduce barriers to access and design improvements.
This toolkit has been developed in-line with the NHS England Statutory Guidance, Working in Partnership with People and Communities, which includes 10 principles to follow to build effective partnerships with people and communities:
Put the voices of people and communities at the centre of decision-making and governance, at every level of the ICS.
Start engagement early when developing plans and feed back to people and communities how their engagement has influenced activities and decisions.
Understand your community’s needs, experience and aspirations for health and care, using engagement to find out if change is having the desired effect.
Build relationships with excluded groups, especially those affected by inequalities.
Work with Healthwatch and the voluntary, community and social enterprise (VCSE) sector as key partners.
Provide clear and accessible public information about vision, plans and progress, to build understanding and trust.
Use community development approaches that empower people and communities, making connections to social action.
Use co-production, insight, and engagement to achieve accountable health and care services.
Co-produce and redesign services and tackle system priorities in partnership with people and communities.
Learn from what works and build on the assets of all ICS partners – networks, relationships, activity in local places.
As we began greater collaborative working arrangements, we worked together with involvement leads across the Integrated Care Board (ICB) footprint to develop stronger partnership arrangements. Through this partnership work, we held conversations with our stakeholders to understand what has worked well for involvement, what could work better, and in an ideal world, how the ICB can deliver excellence through involvement across the North East and North Cumbria. This information was used to develop the principles, aspirations, and framework for involvement for the ICB. This framework has been built upon conversations with our stakeholders, and a shared commitment to continue to involve patients, public, carers, and wider stakeholders in shaping, evaluating, and improving the services we commission.
An Involvement strategy was produced in coproduction with partner organisations. Based on research with partner organisations, the strategy is based around the following five themes.
We will reach out to people to involve them in the right way to increase participation.
We will promote equality and diversity and encourage and respect different beliefs and opinions.
We will take the time to plan for involvement, including how we can work with partners, and feeding back.
We will continue to build on our partnership relationships, in particular to ensure knowledge and capability is shared for the future.
We will use a range of best practice involvement methods including both on-line and off-line methods.
This strategy ensures that NHS NENC ICB has a clear plan in place to meet legal duties to engage and consult the public and pledges set out in the NHS constitution.
The first place to start with any involvement activity is to prepare a communications and engagement plan; however, before you do this there are steps you need to follow:
Your first step is to complete an Involvement Planning template and return it to icb.involvement@nhs.net. This template should include details about the project, any existing insight data, budget, and timescales. Incomplete templates will create a delay in your identified timescales.
The involvement planningtemplate will be reviewed by a member of the involvement team, and they will arrange a scoping meeting to discuss your project and how best to involve people.
An involvement lead will be assigned to your project for ongoing advice, signposting, and support. They will determine what level of engagement is needed.
You will need to carry out an equality impact assessment. As part of the process of identifying people who may be affected by your project, impact assessments should be completed to ensure that all people and communities, including those with protected characteristics such as age or disability, are fully considered. Impact assessments look at the effects of the proposals on people, communities, quality, and health inequalities. A member of the involvement team can support you to identify audiences your project is likely to impact
To help you undertake engagement for your project, a Communications and Engagement plan will need to be prepared. To properly plan and prepare engagement activity.
NB: you need a minimum of 6-8 weeks before you start to speak to people to properly plan and prepare engagement activity.
Things to consider in your plan are:
Information about the current service
The focus for this involvement activity
What you already know e.g., any proposed modelling
What is in scope and what is not in scope
Objectives, what are you looking to understand, experiences/aspirations?
Stakeholder map
Key messages
Plan and budget for engagement (methods to reach certain audiences)
Evaluation and review
The involvement officer will help you identify stakeholders, the appropriate channels to reach them and work with the communications team to develop key messages, promote opportunities to get involved and manage media/stakeholder interest.
As required, and depending on the resource available, the involvement team will allocate members of the team to support with engagement activities or will manage the commissioning of external engagement support if internal resource is not available or more specialist skills are needed. The involvement team will work out costings for all aspects of engagement activities which will need to be factored into the overall project.
Where possible, the involvement officer assigned to your project will attend meetings as required and monitor engagement activities.
It is important that any feedback is analysed and used to produce insight reports for consideration as part of the decision-making process. External contractors will be able to support with
They will help you inform those people you’ve engaged with to let them know the outcome of the engagement exercise and how that feedback is being considered.
When planning to do engagement that does not require formal public consultation. Please allow at least four to six months.
This will include
preparation – research
engagement phase – surveys, listening events etc
analysis and report writing
If planning for formal public consultation, please allow at least nine to 12 months.
preparation – research/case for change/modelling
pre-consultation engagement phase
consultation
analysis
If major service change is likely, for instance reducing or decommissioning a service, formal public consultation will almost certainly be needed. There is a process to follow, and you must carry out pre-engagement before planning for formal consultation. The involvement team will advise, and support and budgets will vary according to whether you need to consult.
It is very important to understand who our local communities and key stakeholders are to ensure we involve them early to understand and listen to their needs, so it's vital to ensure their voices are at the centre of developing our health and care services, from planning to delivery.
There are many ways to reach out to people to be involved in your engagement activity. Listed below are a few ideas. These can also be used as methods to engage.
Patient Participation Groups (PPGs).
Voluntary community sector organisations (VCSOs).
Social media, such as Facebook, Twitter, and Instagram.
GP information screens.
Link with Healthwatch
Through local partners
Existing patient lists, with consent to contact, where available.
A stakeholder map is a list of people and stakeholders you need to think about for your involvement activity.
All the stakeholders you identify are important, but it's important you don’t include them all in the same box in your map. Some stakeholders will need to be kept informed through information shared on social media, email, or meetings. Others you will actively try to engage with and collect their thoughts.
The ways you reach out to stakeholders need to be appropriate for that group of people.
What you know about your stakeholder and what they tell you might change where they sit on your map, over time. You should start your stakeholder mapping early and update it as your project develops.
The Involvement Team can share lists of stakeholders, though these will not be exhaustive.
The ICB is committed to supporting people to be involved as much as possible. Sometimes there will be a cost to do this. Think about having a budget for:
Covering expenses (such as travel and parking).
Contribution to VCSOs for asset-based focus groups (approximately £200 per focus group).
Providing an interpreter.
Paying room hire, refreshments, and other meeting expenses.
Printing of paper surveys, leaflets, and posters.
Return postage costs for surveys
Data inputting of paper surveys.
Social media promotion.
Costs to analyse and write
You should try to use a range of different methods when involving people. Remember the Involvement Team are here to advise and support you when engaging with the public, staff, and stakeholders. They can also provide a list of external providers who can help with different research activities.
Method
Outline of approach
Survey (online or paper copy)
A set of structured qualitative or quantitative questions. Useful for detailed information about feelings, thoughts, perceptions, and opinions. These can be delivered by the ICB Involvement and Engagement team, through an external contractor, or by an expert within the community (asset based). The Involvement and Engagement Team have a licence to support online surveys.
Focus groups / workshops
Small group discussion exploring pre-agreed topics. It's important to provide participants with an information sheet letting them know more about why you want to speak with them and a consent form. You also need to agree the questions (also known as a discussion guide) beforehand.
Interviews / conversations
Usually conducted one to one, interviews can be structured or semi-structured exploring pre-agreed topics which allows deeper exploration of issues. Similar to focus groups, participants will need an information sheet and the questions will need to be agreed in advance.
Co-production events
These are a good opportunity to involve the public and stakeholders in developing service design. Co-production is a way of working that involves people who use health and care services, carers, and communities in equal partnership; and which engages groups of people at the earliest stages of service design, development, and evaluation. Co-production acknowledges that people with lived experience of a particular condition are often best placed to advise on what support and services will make a positive difference to their lives. Done well, co-production helps to keep discussions and developments relevant and to maintain a person-centered perspective. The guidance is available in TOOLS AND TEMPLATES AVAILABLE TO SUPPORT YOU section
Community engagement / outreach
Going to communities where they are by attending their existing meetings. Funding trusted community organisations to partner with you to reach specific communities
Public meetings and events
These can be used to share and collect information with a large number of people. Always think about accessibility when planning your meetings, e.g., avoid evening events during Ramadan, avoid Fridays which may be a religious holiday for some cultures. Ensure your meeting is held in a venue that is fully accessible with ramps, wheelchair access, hearing loops and is located on an accessible bus route, refer to event checklist
Pop-up stalls
These are good to engage with people and distribute information of public venues, using pop up stalls, for example at shopping centres
Working with people with lived experience
Individuals with specific experiences of services that are recruited to participate in planning, design, and decision-making groups. We want to ensure that the recent, relevant lived experience of people using our services (and their families and carers) can help to inform service change and improvement. To help with this, the involvement team may have existing patient stories that have been collected to feed into your work. We also want continuously collect patient stories and we have guidance and templates that will help you collect the voice of patients, staff, and stakeholders - Storyteller process
A patient story is an individual's personal account of their experience as described in their own words.
At its simplest, it is a conversation with a patient or someone close to them, such as a relative or carer, which is recorded and transcribed. Patient stories are a continuous improvement tool which help identify areas where we need to improve the quality of services and transform patient and carer experience, through listening and learning from the patient voice. Patient stories can be positive, negative, or combine elements of both. Through patient stories we capture evidence of the quality of services, share the learning about what was good and what needs to be improved, who then take forward any improvements identified together.
Leaflets and posters
These can be distributed to community venues, GP surgeries and pharmacies, at public events, or through on-street distribution methods
Social media
ICB Facebook, Twitter and Instagram. This is a great way to get information out to the public and encourages two-way dialogue. Feedback from social media can form part of your analysis.
In addition to some of the standard ways to involve people, you should also try to think creatively to reach as many people as possible. For example, you can:
Stream your events live on Facebook.
Use live question and answer sessions on social media.
Use targeted advertising on social media to reach a specific target group.
Use infographics on Instagram.
Use British Sign-Language interpreter (including for online events).
Produce easy-read documents, surveys, and results reports.
Create videos and animations.
Hold feedback events to make sure you got things right.
Work in co-production with our communities and partner organisations.
Go out to the community, rather than expecting them to come to you.
Whichever way you decide to involve people, remember to make your activities as accessible and creative as possible.
After your engagement project, it is essential you feed back the information and insights gathered. Your feedback should clearly tell people what you found out and inform them on how the ICB will use this information to influence decisions and future plans of local health and care services.
Feedback is also the chance for a two-way dialogue. We don’t stop listening at the end of an engagement activity, so use this as an opportunity to check you have got things right.
You can also test your research findings, by summarising what you have learnt and go back out to people to ask what they think.
There are many ways to feedback. Remember to think creatively and to make your feedback accessible so everyone has an opportunity to be involved. You should use several methods to feedback.
Written reports.
Posters / leaflet.
Newsletters / email bulletins.
Online – ‘You said, we did’ feedback page.
Through social media.
Feedback events / meetings.
Press releases.
Power point presentation with audio.
Letters or emails to participants.
On-street kiosks / activities.
Animations or videos.
Through public meetings.
GP screens.
Pharmacy bags.
We all learn through evaluating how successful projects were. Once you have completed your plan and throughout your activity, consider what else you might need and at the end, evaluate to consider how you might do differently in future.
Look at the aims and objectives you set at the start of the engagement and ask yourself the following questions:
Did we identify clear objectives that support wider project, programme or organisational goals?
Did we identify the right people and stakeholders (and any potential gaps)?
Did we identify the right messages and methods for the participants?
Did we identify a realistic set of outputs and activities?
What did we learn and have we fed back to those involved?
Remember – you need to review your involvement activity, including how effective it has been, and act in response to what you have learnt.
By monitoring who you engage with, you can identify any gaps and people you still need to speak with. You can then put on additional activities to help speak with as many people as possible.
A lot of time, energy and resource will have gone into your engagement work. It’s important to reflect on and evaluate the work you have done to understand what worked well, what could have been done differently and key learning.
