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Patient Engagement

Aims and objectives

  1. What does PPI mean and why is it important to consider? 
  2. The why/who/how approach to getting PPI.
  3. How to plan and structure PPI engagement to minimise barriers to participation.

Introduction

Patients’ experiences of digital access to NHS services are often clunky and fragmented, and uptake of digital options for ordering repeat prescriptions and booking appointments in primary care remains low despite the functionality being widely available. At the same time, there are indications that poor staff experience of IT systems can negatively impact on their working lives. This underlines the importance of understanding users’ needs and involving them in the design of new technologies.

Patient and Public Involvement Engagement (PPIE) can be described as the different ways patients, carers and members of the public can work with healthcare professionals, researchers and clincial decision makers to inform, influence, and shape projects and programmes within health and care. This is because people who care about, and use, health and care are experts by experience: they have first-hand knowledge and insights from their day-to-day lives.  

Only through speaking and listening to patients, carers and the public can we understand more about what is and isn’t working for people currently, and by working together we can find solutions that better respond to their needs.  

Working together in this way can have significant benefits: 

  • It can improve quality of life by designing and delivering treatment and care approaches that better address community needs. 
  • It can help reduce health inequalities by designing and delivering programmes which are more accessible and equitable to all. 
  • It can lead to cost-savings through better resource allocation and increasing efficiency and uptake of treatments/services. 

As well as the benefits it has for you and your work, NHS England staff have a legal obligation to involve patients in planning and commissioning within Primary Care1. The Integrated Care Boards (ICBs) have also committed themselves to engaging with local communities as part of their strategy development2 .

NHSE has now made equality and impact assessments especially relevant to technology. Suppliers must demonstrate how they include/consider all protected characteristics in the research and design and application of the technology as opposed to potential exclusion which widens health inequalities.

Three steps to excellent involvement

There is not a one-size-fits-all approach to PPI: and so each project you do will be completely unique. This is because there are different reasons for doing PPI (‘why’) and different communities you can work with (‘who’) which will influence what type of activity you might need to do (‘how’). 

However there are three steps of thinking that will help you design and develop excellent PPI activities: 

Step 1: Why? Your Purpose 

Before doing anything else, you need to have a clear idea of what you’re hoping to achieve through the involvement: why are you doing this? 

PPI activities are about providing opportunities for patients, carers and the public to inform, influence, and shape projects and programmes within health and care, so some aspect of this should be included in your purpose. For example: your purpose might be to get insights about the roll-out of a new online booking system. Or you might be looking to work together to decide what healthcare areas need priority investment. 

No purpose is better or more valid for PPI than another, as long as they always offer patients power and influence in decision making. 

Step 2: Who? Your audience 

Once you have your purpose mapped out, you can then think about defining your audience: who do you need in the room to achieve your purpose? 

It pays to be specific when you think about your audiences. This is because if you try to target ‘everyone’ or the ‘general public’ you may not have the people with the right knowledge or most useful insights—stopping you from achieving your purpose. Instead think about what communities would bring the most knowledge/insight to the work, for example people from specific geographies, specific demographics, people with lived-experiences, people who have specific interest areas. 

Step 3: How? Your approach 

This final step allows you to start converting your thinking into delivery: how do you make an activity that will allow you to meet your purpose and appeal to your audience? 

There are lots of different activity types that you could use, from surveys through to priority setting partnerships. To decide which approach is best for you, go back to your purpose and think what type of exchange you want to be able to have with the patients, carers, and public members who are attending. Are you looking to mainly hear their feedback and ask for their opinions or are you wanting to design solutions together?  

Some common activity types you can draw on are: 

  • Surveys: These are best when you’re trying to consult with large numbers of people. These will help give you preferences, but it is difficult to get meaningful insights from them as people will very rarely give you detailed feedback, even in open text boxes. 
  • Interviews: These are best when you’re trying to consult with smaller numbers on a one-to-one. These will help you get a sense of preferences and can allow you to get more meaningful insights as you can ask ‘why’ people have responded in the way they have.  
  • Focus groups: These are best for when you want to consult with groups to get a sense of areas of agreement and areas of dissent. Focus groups allow participants to engage in conversations with one another giving added richness. You can also use them as spaces to explore compromises collectively. 
  • Workshops: These are best when you want to collaborate and work in partnership. These can help generate discussions between public groups around collective areas and allow people to work together to create new solutions. Workshops could be all public attendees, or you could invite public and professional contributors into the space to work together. 
  • Advisory Panels: These are best when you want to consult and collaborate with patients, carers and the public on a long-term basis. You can work with a mixed group of representatives semi-frequently on a variety of tasks. 

You might find it useful to mix-and-match some of these approaches (start with a survey and then do a focus group to explore survey results) or you might want to try something completely different: as there is no right way to do involvement, you can experiment and innovate to find an approach that helps you achieve your aim. 

You should also give some consideration to the preferences of your audiences to choose the approach or create something that appeals to them and enables their participation. Are there certain methods or activities that would suit them better—for example would they prefer to be involved in discussions or do something hands-on? Are there times, days, or locations that would make it easier for people to attend? 

Minimising barriers to involvement

Embedding PPI into the development and implementation of health and care programmes allows us to take a more well-informed approach to service design. This allows us to create more accessible and inclusive services which can go some way to addressing health inequalities within communities.  

Because of this, it’s important that patient involvement activities are designed in a way that empowers and enables diverse voices to participate. This is why it is important to spend some time minimising barriers to involvement during your design: what sorts of things could stop patients, carers and public groups from working with you?  

Some common considerations to make include: 

  • Being flexible in the days and times that you run activities: we all lead different lives, so provide people with options of when sessions will take place so that they can join the slots that work best for them. 
  • Choosing locations that are welcoming, familiar and accessible: not everyone is comfortable in, or able to travel to, healthcare spaces so instead go to the communities you want to engage with and use the spaces that they usually congregate in. 
  • Advertising opportunities through multiple channels: not everyone will be regular visitors to health and care spaces, so instead actively reach out to your groups of interest through advertisements in the places they may get their information from (social media, community mailing lists, charities, places of worship). 
  • Making sure the language you use is clear and jargon-free: to make everyone feel like they are able to get involved, use language that is accessible to everyone regardless of their educational/professional backgrounds and better supports those who may have English as a second language. 
  • Providing online and in-person options for involvement: there are some communities that have trouble in participating online for various reasons—including digital inequalities—so you should always consider if you can run both online and in-person versions of your involvement activities (or hybrid). Alternatively, you could explore what additional support they might need to participate online (e.g. data packages, new software, walkthroughs on platforms). 
  • Providing additional support for people to attend: try and make sure you have provision for reasonable accommodations for the communities you are trying to engage so this could include things like translators, large-print versions of materials, captioning, wheelchair access, or even mobile data packages. 
  • Paying people for their times and expenses for being involved: as we are asking people to give their time and expertise to get involved in projects, we should show that we value this insight through offering payment. This also means that those who may have been unable to participate in voluntary capacities due to their personal circumstances previously may now be supported to get involved. 
  • Creating environments where everyone is supported to share their views: to enable everyone to feel comfortable we need to create spaces where everyone can participate equally. This can be done by helping the individuals feel like a group through introduction activities, context setting, and outlining ground rules for the collective work. In the sessions itself, you should be there as a neutral facilitator—there to listen and acknowledge—allowing a lot of open space for discussions and collaboration between participants. 

Key resources and further information