Free Public and Patient Involvement Toolkit (PPI)

Introduction

Involving People, part of Help & Care, improve health and care outcomes by involving patients and the public in the design, delivery and transformation of health services.

This Toolkit is a practical guide to help organisations plan and deliver effective involvement. The aim is to enable organisations to listen to patient and community voice as part of their core work, as well as run involvement activities on specific topics.

The Toolkit is made up of 11 sections. Click each drop down for further information. At the end, you will find a complete list of templates. If you have any accessibility requirements or questions, please let us know.

As health and care services increasingly focus on Neighbourhood-based approaches, you will often be asked to engage with communities, co-design services with communities, consult with patients, narrow the health outcomes gap by connecting with underserved communities, and develop links with the wider voluntary sector. But what does this really mean, how will it make a difference, and how do we do this effectively?

These are some of the questions this toolkit aims to answer. It will help you to devise and deliver your involvement approaches well, contributing to better services and improved outcomes. It will help you not only with the detailed mechanics of patient and public involvement but also the cultural shift it requires. It contains explanations, templates and checklists you can use, and suggests other sources of information.

The Toolkit starts with some background and context — explanations of why patient and public involvement matters and summaries of the legal requirements.

It continues with an exploration of what we mean by the different terms and approaches, such as consulting, involving, co-producing — explaining the terms and giving examples.

We then move on to providing detailed guidance on how to involve — what this means in a practical way, setting out the principles, methods, “do” and “don’t do” tips.

There is also an important section on the links between patient and public involvement and equity in health — showing how involvement must be designed to tackle inequality and ensure equity. We set out how well-designed involvement can promote equity in health outcomes.

Throughout, there are handy templates and checklists — hence calling this a Toolkit.

The Toolkit can only be a guide that prompts your thinking and supports your work—it is not a set of instructions. Your approach will be tailored to your demographics, your resources and what you are trying to achieve. If you want more hands-on support or more detailed advice, we can talk to you about how we can help. Drawing on years of experience in patient and public involvement, our skilled and enthusiastic team can help you build stronger Neighbourhood connections, engage underserved communities and design services that reflect local or specific community needs. We’d be delighted to discuss how we can support you — please get in touch.

1. Why involvement matters

Involving people will help you to make better decisions, deliver better services, achieve better outcomes and in some cases increase uptake and equity. It will make you able to better tailor services to meet need.

Involving people will help you to make better decisions, deliver better services, achieve better outcomes and in some cases increase uptake and equity. It will make you able to better tailor services to meet need.

Above all, involving people is the right thing to do, however, it’s important to remember that there are also legal requirements to do so, which we set out below, in summary.

The requirement to involve people is embedded in:

Legislation

The Public Involvement Duty — NHS Act 2006, section 242, (amended by the 2022 Health and Social Care Act) mandates that commissioners and trusts must ensure that patients and the public are involved in certain decisions that affect the planning and delivery of NHS services — planning of provision, proposals for change and operation of services.

The Health and Care Act 2022 establishes the “triple aim” duty. This requires health bodies to have regard to ‘all likely effects’ of their decisions in relation to:

Health and wellbeing for people, including its effects in relation to inequalities.
Quality of health services for all individuals, including the effects of inequalities in relation to the benefits that people can obtain from those services.
The sustainable use of NHS resources.

It states that ‘effective working with people and communities is essential to deliver the triple aim’.

Guidance

The most recent Guidance to the health sector from NHS England stresses the importance of patient and community voice.

NHS England’s Guidance on Working in Partnership with People and Communities (published August 2025, updated June 2026) states:

“There are clear benefits to working in partnership with people and communities. It means better decisions about service changes and how money is spent. It reduces risks of legal challenges and improves safety, experience and performance. It helps address health inequalities by understanding communities’ needs and developing solutions with them. It is about shaping a sustainable future for the NHS that meets people’s needs and aspirations”.

It sets out 10 principles to help organisations achieve the benefits of working with people and communities. They are:

Ensure people and communities have an active role in decision-making and governance.
Involve people and communities at every stage and feed back to them about how it has influenced activities and decisions.
Understand your community’s needs, experiences, ideas and aspirations for health and care, using engagement to find out if change is working.
Build relationships based on trust, especially with marginalised groups and those affected by inequalities.
Work with Healthwatch and the voluntary, community and social enterprise sector as key partners. Healthwatch is currently in a transitional phase, so local capacity, priorities and reporting arrangements may vary during this period.
Provide clear and accessible public information.
Use community-centred approaches that empower people and communities, making connections to what works already.
Have a range of ways for people and communities to take part in health and care services.
Tackle system priorities and service reconfiguration in partnership with people and communities.
Learn from what works and build on the assets of all health and care partners — networks, relationships and activity in local places.

The new Neighbourhood Health Guidelines set out the three shifts from hospital to community, treatment to prevention and analogue to digital. To achieve these aims it sets out the requirement to work in partnership with communities (including people and carers with lived experience and local third sector organisations) to co-develop neighbourhood health locally and mobilise change. In tackling health inequalities, systems are required to engage with local communities to design and deliver services.

The NHS constitution sets out patient rights in relation to involvement at both an individual and collective, level:

“You have the right to be involved in planning and making decisions about your health and care with your care provider or providers.”
“You have the right to be involved, directly or through representatives, in the planning of healthcare services commissioned by NHS bodies, the development and consideration of proposals for changes in the way those services are provided, and in decisions to be made affecting the operation of those services.”

Findings of major inquiries

Many high-profile inquiries have also concluded that not listening to patients has been a major contributing factor in service failure.

Here is a quote from the Mid Staffordshire NHS Foundation Trust inquiry, led by Sir Robert Francis, into the failings at Stafford hospital:

“The story it tells is first and foremost of appalling suffering of many patients. This was primarily caused by a serious failure on the part of a provider Trust Board. It did not listen sufficiently to its patients and staff or ensure the correction of deficiencies brought to the Trust’s attention.”

“Statistics and reports were preferred to patient experience data.”

“Trust management had no culture of listening to patients.”

Similarly, a quote from the review by Donna Ockenden into maternity services at the Shrewsbury and Telford NHS Hospital Trust:

“For far too long women and families who accessed maternity care at the Trust were denied the opportunity to voice their concerns about the quality of care they received.”

2. Challenging the “why not to involve”

When thinking about involving people, there are several arguments that can be voiced that may steer you away from this approach. Here are some of the common reasons “why not to involve”, and how to overcome them.

When thinking about involving people, there are several arguments that can be voiced that may steer you away from this approach. Here are some of the common reasons “why not to involve”, and how to overcome them.

Barrier	How to overcome
Involving people is time consuming, and we don’t have the time	True, it is time consuming and the only way around this is to plan early. Also, the more connected you are to communities the less time it will take. And if you engage regularly, or reach out to partners, you may find there is feedback and views already available that you can use. See “Planning”
Involving people only generates criticism	Involving people sometimes does generate criticism, which may seem unfair (though it may well be valid). It also, however, often generates gratitude and positive, useful feedback. All feedback is valuable and should be responded to as such. And constructive discussions can often shift “conflict” into “partnership”. See “Feedback”
Involving people will generate requests we cannot respond to	If you’re honest about the parameters of the involvement, and ask the right questions, this is less likely to happen. People generally understand the limitations of what services can and can’t do, as long as this is explained well and they feel properly listened to.
Involving people is costly	Yes, it does need resourcing. Again, an organisation that engages well, often, and as part of its core activities, will have access to partners and feedback they can use on an ongoing basis. See “Planning”
We are unlikely to learn anything new	If that’s the case, then involving people will enable you to confirm and validate what you know. But it’s unlikely you will learn nothing from listening to patients and the community. Patient experience offers a different perspective.
People won’t want to get involved	This can happen – but it is unlikely if you use the best methodology for your involvement, give a lot of thought as to which people you need to reach, and how to reach and support them. See “Which method”
The “wrong” people will get involved – i.e. the usual people, not those we rarely hear from	Again, this can be resolved by ensuring the right methodology, thinking carefully about who you want to engage with and how you will reach them. See “Which method”
We will hear conflicting views and it will be impossible to take all views into account	Again, this is a possibility. And it will be your responsibility to manage these differing views. However, you may also find consensus. Explaining why something can’t be done will be important. See “Feedback”. It may also be the case that different groups have different needs, and these will have to be accommodated. This is especially the case when trying to ensure more equal health outcomes. See “Equity”

3. What do different terms mean?

When considering patient and public involvement there are many terms in use that need to be well defined — like consultation, involvement, coproduction.

When considering patient and public involvement there are many terms in use that need to be well defined — like consultation, involvement, coproduction. The Ladder of Engagement (see an adapted version below) was developed by Sherry Arnstein in 1969 to categorise citizens involvement in policy making, ranging from “non-participation” to “full control”. The model has been adapted many times and remains a useful framework that helps us think about the levels of influence people have when we involve them in decisions about healthcare.

To keep it simple we are only using the above five levels (Arnstein set out 8 levels). And while these are set out as distinct and separate levels, in reality organisations and projects will use a mix of approaches.

So, to set out what these terms mean:

You can engage with people by simply giving them information (having already made the decision) by telling them something and passing on information they need to know. This is the INFORM level. For example, posting on the practice website that surgery opening times are changing, writing to service users to let them know that the location of a service is changing.

You can also ask for feedback but keep the decision making within the organisation — this would be the CONSULT level. You are offering option/s or
seeking views, which may or may not be taken into account. For example, drafting information leaflets and asking which is the preferred one or running a survey to find out views and comments on transferring a service to a new site.

The INVOLVE level suggests joint working to come up with a solution. You may draw people into a longer-term conversation or process. For example, inviting people with lived experience to join and contribute to a working group, or quality improvement project, holding a series of engagement meetings with a voluntary group to develop or test a proposed service change. The key thing here is that decisions sit within the organisation, but you are inviting people to join you more deeply in discussion.

When services CO-PRODUCE they work collaboratively with patients/the community as equal partners, on an ongoing basis, designing solutions together from a “blank sheet”. Decision making is shared.

Where communities or individuals are enabled to design their own services, this would be an example of DEVOLVE. An example would be individuals receiving personal budgets for their care and support. At a collective level, providing grants to specific groups to deliver their own health messaging or to support their own communities, would also be an example of “devolve”. Here you are letting go of decision making. This aligns with a community development approach where people are enabled to meet their own needs, having trusted relationships in their communities and insight into and experience of needs.

The important thing is to:

Select the approach, which is most appropriate to the specific circumstance.
Be absolutely clear about which approach you are using.

Don’t say you are consulting if you are informing.
Don’t say it’s co-production if it’s consultation.

Honesty and clarity matter!

And just for clarity, often the words involvement and participation are simply used as generic terms to cover the range of approaches.

4. How to involve

While there are numerous ways to involve people in decision making, and to seek people’s views, these can be broadly categorised into the general methods set out below.

While there are numerous ways to involve people in decision making, and to seek people’s views, these can be broadly categorised into the general methods set out below. Note that each option can be delivered in a variety of ways using very different approaches which can enhance the ability of people to truly get involved. For example, a large meeting where people are simply asked to comment if they have a view will be very different if:

People break up into small groups, discuss an issue, and report back their views.
Write their views on post it notes / in the chat and then discuss everything that has been raised.

In green you will see how these methods relate to the level on the ladder of participation referenced in the last section.

Method	Pros	Cons	Think about
Public Meetings / exhibitions inform consult	Can reach a large number of people Good for imparting information	Can be conflictual Many people find it hard to have a say in this environment Confidence and equality issues	How to make sure people can meaningfully input
Small Meetings / workshops involve coproduce	Can involve people in more depth and over a period of time Get good insight	Fewer people are engaged	How to ensure representativeness and support people to meaningfully input Online versus face to face options
Focus groups involve	Get deeper into an issue Can be useful follow up to quantitative survey People “bounce ideas” off each other Processes in place to ensure the group is representative	A lot of work to set up and write up	The skills required to plan, invite, facilitate and write up – specialist are needed Online versus face to face options
Surveys consult	Can reach a lot of people and gather a lot of data Good for gathering quantitative data	Not so good for qualitative information People are not able to comment on things that are important to them (they are answering your questions) Analysis can be time consuming and complex – requires skill Can be inaccessible	Getting the questions right – and test them first
Semi structured interviews consult involve	Participants can guide the conversation	Analysis more challenging	The skills required for interviewing Online versus face to face options
Community development devolve	Allows people and communities to develop their own solutions	Requires long term investment and “letting go”	The skills and time required
Citizens Panel* involve co-produce	Provides a pool of people keen to get involved on a range of issues	Need to keep refreshing the group	Ongoing communications – you need to keep in touch regularly Which method to use on each issue – the panel is only a group of people who will get involved
Community Research involve co-produce	Involves those from the group being “researched” at every stage – from research design, recruitment, interviews, to data analysis and dissemination of findings	Needs significant commitment and time to deliver	See our Community Research pages

*This is a representative group of people who can be called on to take part in a range of involvement exercises over a period of time.

Another form of Citizens Panel is a selected and representative group of people who meet over a period of time, supported and informed by experts, to consider and conclude on a given question / issue.

Also see the Healthcare Improvement Scotland online Participation Toolkit that offers a range of tools, guidance and resources. It sets out more detailed methodologies and their appropriateness in different situations.

Principles

A poll of 170 Wessex residents established 10 good practice principles that should be used when engaging with people.

Be open and honest about what is possible and what is not possible.
Communicate clearly in easy-to-understand, plain language.
Listen and act on patient and carer feedback at all stages of decision making.
Be accessible — the way you engage people should be tailored to the needs of the people you are trying to engage – ask people what will work best for them.
Involve people as early as possible.
Base relationships on equality and respect: patients and the public have an equal voice to professionals.
Work hard to seek the views of people and communities who experience the greatest health inequalities and the poorest health outcomes, make it easier for people to take part, identify barriers and remove them.
Allow plenty of time for people to receive information, read it and respond to it.
Review, evaluate and publish the impact of patient, carer and public engagement.
Allocate appropriate resources and support so that engagement can be effective.

When carrying out consultation it’s also worth taking account of the Gunning Principles—four legal rules designed to ensure public consultation is legitimate and fair. The principles date from the 1985 case Gunning v London Borough of Brent, and are as follows:

Consult at a formative stage — before decisions are made so that people genuinely have the opportunity to influence.
Provide sufficient information — explaining the proposals and their rationale and impact, so that people can respond meaningfully.
Give adequate time for responses — so that people can consider and provide feedback.
Take responses into account — genuinely consider the feedback and demonstrate it influenced the final decision.

As a whole organisation or system, how can you ensure you listen to, learn from, and act on patient and community voice on an ongoing basis?

Ensure that everyone, from those who work directly with patients to those who lead the organisation / system, expresses a commitment to the value of patient and public involvement.
Build relationships with local community groups and the voluntary sector, who will help you connect to your communities and bring their voices to the table (either directly or by representing their views).
Listen to and use feedback on an ongoing basis — not just for one-offs. Build patient and public voice into all discussions and decisions at all levels. People are feeding back to you informally (talking to staff) and formally (complaints, comments, feedback) all the time — analyse and use what they say!.
Resource involvement — employ specialists, train everyone, provide budgets and allow time for involvement.

5. Equity: Equality Impact Assessment and Accessible Information Standard

There is a significant amount of evidence showing that access to health services and outcomes varies widely depending on things like a person's ethnic origin, sex, gender and socio-economic background.

6. Planning

Before taking part in any involvement exercise, we need to ensure that participants give informed consent. We have developed an Information and Consent form template.

Before taking part in any involvement exercise, we need to ensure that participants give informed consent. We have developed an Information and Consent form template (to be adapted as necessary) for this purpose.

What do we already know?

Before embarking on any exercise to find out what people think about anything, check what you already know. This may be a great starting point or might identify gaps you need to fill. Look:

Within your organisation. You will already hold considerable amounts of data and insight – Friends and Family Tests, complaints data, findings from national surveys (e.g. Cancer Patient Experience Survey – CPES, National GP Survey). Talk to relevant staff about what they know and hear from their patient contact.
Partner Trusts and providers within your system. As above, they will hold data and insight that may be relevant. Some systems have developed platforms to hold results of involvement exercises.
Other partners in your system. For examples your local authority Public Health team will hold data and insight. The voluntary and community sector may have insight and data they have collected or be able to connect you to those who do.
Healthwatch: Has your local Healthwatch done any work on this issue or can the national Healthwatch England report library provide any useful reports? Healthwatch is currently in a transitional phase, so local capacity, priorities and reporting arrangements may vary during this period.
Care Opinion: Care Opinion Organisations subscribe to Care Opinion which then collects insight from patients — do your, or similar organisations subscribe?
Patient Experience Library: They hold over 70,000 publications from all parts of the health system and their library is very easily searchable.

If you start by looking broadly at what is already known you will be making good use of work that has previously been done, voices that have expressed their views, and building on it. It’s not cheating.

At Involving People, we always begin with a literature review — it shapes the work and prevents duplication.

Public and Patient Involvement Design Brief

We have devised a Public and Patient Involvement Design Brief — a simple template to help you think about how to approach patient and public involvement activity.

The questions prompt a conversation about:

What you want to understand from people.
How you will go about finding this out.
How you will demonstrate people have influenced your project.

It is not a replacement for your existing project planning tools but for you to use specifically for Public and Patient Involvement. It can be adapted and changed accordingly.

Checklists — preparing and supporting people

Briefing people is really important for the success of your involvement activity. Once you are clear why you are involving people and what their role will be, you can use this checklist to help prepare them for their involvement.

Checklist for participants — so participants can assure themselves they have everything to support their involvement

Checklist for organisers — to help you ensure you have done all you can so that participants can be as effective and comfortable as possible

Obviously, the requirements of a large-scale survey will be different to a small focus group, so you can amend the checklists to make them appropriate to your situation. In summary, do participants:

Understand the purpose of their involvement?
Need any support to take part, including accessibility arrangements?
Know who they are representing? (if anyone)
Have all the practical information they need, e.g. organiser’s details, how to log on, (or, if in person, where events will take place), when and for how long?
Have (as relevant) terms of reference, agenda, briefing sheet, interview questions in advance?
Know who else is taking part?
Understand how any data collected will be used (see Governance — consent for more information).
Understand how and where their views will be represented?
Know how to claim expenses?

This will make people feel more comfortable and confident about being involved. Most importantly, it is important to be friendly and welcoming. This will ensure people feel valued and, if the involvement is ongoing, will make it more likely they will stay the course.

Communications

It is also important to have an effective communications plan in support of your involvement work. This will ensure you are informing your stakeholders at the right time and in the right format with the right messages. It will help with inviting people to get involved and ensuring everyone is provided with updates on progress and final feedback on findings. You can find our template here.

Governance

Those getting involved, in whatever way, need to have clear information in advance about what they are getting involved in. This was mentioned in the above checklists and our information and consent form (to be adapted according to the specifics of the project) provides participants with information about what they will be involved in, how the information they provide will be used, and enables them to give clear consent to being involved.

We have also created a governance checklist which you may find helpful.

Review/evaluation

It is always good practice to evaluate how well your involvement exercise went. This should include asking those who participated to reflect on their involvement. This Participant Feedback Form template can be used to enable participants to feedback to you. Future exercises can be informed by their views.

As well as seeking feedback from participants, it is important to evaluate engagement as a team / organisation. We have created an After Action Review template which will support you to revisit your objectives, identify recommendations and consider areas for improvement.

Finally, if another organisation has undertaken or supported with engagement exercises on your behalf, we have created a template to evaluate how it went. Download our Evaluating Public and Patient Involvement Support Template here.

7. Reporting

A written report is often produced as a result of an involvement exercise. This allows the methodology and findings to be recorded, and most importantly should set out how the findings will be used, and what might change as a result of what you have discovered.

8. Feedback

Providing feedback to those who participated is crucial, but sadly, often forgotten. It values their involvement and encourages them to get involved at other opportunities.

9. Key takeaways

Here is a summary of the key learning points from this Toolkit and what to remember as priority.

10. Downloadable Toolkit tools and templates

Please see below a full list of documents referenced throughout the Toolkit which you are able to download.

11. Useful resources

We deliberately don’t provide direct weblinks to resources because over time they become obsolete. Instead, here are some organisations whose websites will provide useful resources alongside our Toolkit.

Public and Patient Involvement Toolkit