What is Patient Involvement?

Patient involvement is the involvement of patients – beneficiaries of health and care services – in all aspects of health and care and services within it.

This includes: the design, delivery, monitoring and improvement of services, on committees, boards and in groups, in advocacy efforts, in the training of staff and professionals, attendance at health and care events, meetings and conferences and so on.

Involvement of patients can also be included within patient-facing aspects, such as gathering feedback, running focus or support groups and peer mentoring. It is enabling patients to be advocates and leaders, as experts by experience.

It is called various different names, which can get confusing. Patient and Public Involvement (PPI), Patient Engagement, Patient and Public Engagement (PPE), Patient Participation (via Patient Participation Groups, PPGs) and Direct Stakeholder Engagement.

Patients who are actively involved and engaged in health, care and other services are usually called ‘Patient Leaders’ or ‘Patient Advocates’.

Why should you involve patients (and carers)?

Patients and carers are a rich, often untapped resource. We have so much to contribute as we live with these conditions, we receive these services, we face battles to get the care we need, we know where the system works and where it fails.

Often, we can come up with solutions to problems, but these solutions go unheard because we don’t have the opportunity to bring them to the board or management team or to feed into service audit or monitoring and evaluation.

We could hold the keys to resolving problems or improving care, support, services and even ensuring cost-effectiveness by explaining what works and what doesn’t, what is wanted/needed and what isn’t and how you can improve or adapt to best suit our needs – the needs of your patients.

We may also be the key to your organisation being the best organisation it can be. We have so much experience and insight to give – so tap into it!

We at Palliative Care Voices subscribe to the UK Disability Rights movement’s motto “Nothing About Us, Without Us!” 

As such, we believe that everything done that has an impact on patients, directly or indirectly, and their families/carers, should have patients and their family members or carers involved from the get-go. From decision-making, to commissioning, to service or project design and delivery, management, monitoring, evaluation, improvement, to advocacy and everything in between.

The involvement of patients in these different domains and activities of an organisation or service may be referred to as ‘co-production’.

Nothing should be done about or affecting us, without genuinely involving and consulting us.

What does meaningful involvement look like?

Meaningful involvement starts from the beginning.

You must integrate patients and carers from the outset of a project, service, piece of work or organisation, including board and strategic level, management, ‘on the ground’ in the provision and delivery (where this is where feasible and appropriate), and as part of your monitoring and evaluation.

Where you are bringing in patients and carers at a later date into your existing organisation and service, it’s important to consider how and where you are going to integrate patients and how best to facilitate their involvement, creating roles or positions or recruiting to existing positions and running exercises to feed views into an existing project.

Meaningful engagement and how and where patients and carers contribute varies as it’s important you tailor it to your individual organisation to ensure patients and carers are fully integrated at all levels.

Involvement comes in many forms. This may include having patient and carer representatives on your organisation’s board, having patients and/or carers as consultants and having a patient and carer advisory group who can advise the board and management.

It can also include having a patient on your recruitment panel and involving patients in the training and continuing professional development of staff. It also includes inviting patients to attend and/or present at conferences.

Meaningful engagement involves an equal partnership between professionals and the patients and carers being involved.

Another point about meaningful involvement is that patient involvement is not and should not be done as a tick box exercise.  No tokenism, thank you. We are not here for you to be able tick a box. Do it properly, or don’t bother! 

How can I involve and engage patients?

There are numerous ways in which you can involve or engage patients and carers. A range of examples are given below, but this is not an exhaustive list.

• Including a patient and carer on your organisation’s board
• Including patients and carers in management and strategic teams
• Inviting patients and carers to meetings as lay-members
• Having a patient and carer advisory panel who can advise the board and management, help inform them of the patient/carer perspective during strategic planning and be involved in overall decision-making around actions and future projects
• Gathering feedback – even having patients and carers as the individuals who gather the feedback or who design the activity/survey/questionnaire itself – including online surveys, face-to-face, paper surveys or through feedback gathering events/groups
• Conducting regular consultation exercises with patients and carers and involving them in facilitating the outcomes – especially informing them of how their views and thoughts led to changes, receiving feedback that shows them their contribution made a difference
• Involving them in communications, as spokespeople and in media, sharing their story, writing articles or blogs, public speaking and bringing the patient voice to your organisations’ communications team and activities
• Involving patients in training of staff and their continuing professional development
• Inviting patients and/or carers to events and conferences and having them deliver plenary sessions
• Involving patients and carers in the production of resources, reports and guides, asking them to proof read and contribute to documents, to proof read policies and to contribute to information on your website
• Having patients involved in the auditing and monitoring and evaluation of your organisation, service or project as “experts by experience”
• Involving patients and carers as advisers or better still, co-researchers in your research project
• Involving patients in your organisation’s HR, including in the recruitment, interviewing and employment of staff to your organisation
• Having people with lived experience on your commissioning board, informing the patient and carer perspective into commissioning and decision-making

And there are other ways of involving patients, too.

What is co-production?

Co-production has no universally agreed definition. However, the UK Care Act 2014 defines co-production as:

“…when you as an individual influence the support and services you receive, or when groups of people get together to influence the way that services are designed, commissioned and delivered.”

The Think Local Act Personal National Co-production Advisory Group says the following of co-production:

“Co-production is not just a word, it is not just a concept, it is a meeting of minds coming together to find shared solutions. In practice, co-production involves people who use services being consulted, included and working together from the start to the end of any project that affects them. When co-production works best, people who use services and carers are valued by organisations as equal partners, can share power and have influence over decisions made.”

The Co-production Network explains co-production in this way:

“Co-production is an approach where people, family members, carers, organisations and commissioners work together in an equal way, sharing influence, skills and experience to design, deliver and monitor services and projects.

“Co-production acknowledges that people who use social care and health services (and their families) have knowledge and experience that can be used to help make services better, not only for themselves but for other people who need them, which could be any one of us at some time in our lives.

“Real co-production means that people are truly involved in planning and designing services from the very beginning.”

The New Economics Foundation (NEF) says that co-production is:

‘The relationship where professionals and citizens share power to design, plan, assess and deliver support together. It recognises that everyone has a vital contribution to make in order to improve quality of life for people and communities’.

The ethics of patient involvement

One query that often comes up about patient and carer involvement, especially in the field of palliative care, is as follows:

Is it ethical to involve palliative care patients and carers?

Surely it could be too much pressure on them? Are they too poorly or busy to do it? Could it be upsetting for them?

In our experience, many patients and carers will jump at the chance to be involved, to share their story, to contribute in some way and to make a difference for others, provided their involvement is in a way or using a method (i.e.: speaking vs writing, or sitting on a board vs participating in focus groups) that they feel comfortable doing.

However, for those who don’t want to be involved, they must be able to say no and will feel able do so provided you assure them that saying no will have no effect on the care or support they receive.

To our mind, not involving people with lived experience in advocacy and other aspects of palliative care should be considered unethical. We are a vital component of the equation and yet much of the time our voices are unheard, because we aren’t given the opportunity to share our story and our experiences and thus to be heard.

When you ask people if they want to be involved, it’s important that you ask them how they want to be involved, maybe give them options to choose from, so that they can specify the ways in which they’d like to be involved and avoiding them being asked to do things they don’t want to do.

The thing is, you are asking them if they want to be involved and how. Those who want to, will, and those who don’t want to, won’t.

As long as they are not pressured into doing something, which shouldn’t happen, then they can pick and choose how and when they are involved.

Would you like to get involved?

To find out more about how you can involve people directly affected, or if you are someone who is directly affected by palliative care and would like to get involved, please contact us.