Patient Involvement & Experience
What is it?
Patient involvement and experience are terms often used interchangeably, however are slightly different areas within quality improvement.
Patient involvement refers to the steps taken within a QI project to engage and include patients in planning and testing. Involvement may include asking patients for change ideas, including their responses in a fishbone diagram or driver diagram, having a patient representative support creating a process map. Involvement tends to be both a reflective and an active process. This is where change happens with the patient.
Patient experience is the measurement and analysis of an individual’s or group’s interactions and satisfaction with a process/system. It tends to be a reflective process. A patient or service user gives feedback on how a current process works, including the parts that are difficult. During changes, services/teams measure patient satisfaction. This more closely reflects when change happens to patients.
A distinction can be made too between satisfaction and feedback. In measures of feedback, services users often determine what they share with the organisation (e.g. includes open questions, spaces for writing free text). In measures of satisfaction, service users are limited to providing information about areas predetermined (e.g. On a scale of 1 – 5 how would you rate the cleanliness of the building?)
Why use it?
Involving patients in Quality Improvement work can be extremely valuable. Patients can offer suggestions for improvement or provide positive feedback about what works well for them. Patients may have relatively small suggestions that make big differences to their overall experience.
It’s important to remember that patients will often be the recipients of whatever change you make. Their involvement should become part of the process, rather than an afterthought.
Some benefits of involving patients include:
Convincing the sceptics – a patient quote can be a powerful tool when convincing colleagues to adopt a change
Confirming what works well – patients may provide insight into what they like as well as what needs improving
Ensuring your systems and processes are built around the needs of patients
Reduce incorrect assumptions made by improvers
Increase investment from people who use and work with the system
Enhance service delivery
How to use it?
There are plenty of opportunities to involve patient in QI. Consider involving them before beginning the project to maximise the impact. When thinking about patient experience measures, consider what it is specifically that you would like to know.
Formal feedback: Consider measuring experience through qualitative or quantitative data before changes, throughout changes and as changes become sustained improvements. This can happen through formal methods such as surveys and questionnaires. The QI team can support you in developing these.
Informal feedback: Make note of informal feedback from patients, even off the cuff comments at the end of a consultation. This will help to guide your understanding of patient experience and may lead you to consider more formal measures.
Emotional mapping example
Emotional mapping
Image reference: https://pubmed.ncbi.nlm.nih.gov/28582636/
Consider:
Practice newsletters, Facebook page and website - share what you’re planning to do and ask for input
Focus groups – either online or in person
Questionnaires/surveys – telephone, written, online
Discovery interviews
Emotional touchpoints – these allow patients to explore the emotions they feel around a situation or experience.
Emotional mapping – best used for patients with long term conditions or chronic illnesses (see image)
Consider involving patients directly as part of your project team. This type of involvement is generally a continuous partnership and likely to be the same group of people for the entirety of your project. When involving patients at this level, more in-depth techniques can be used.
Such as:
Experience based co-design – This is an approach that enables staff and patients to co-design services and/or care pathways, together in partnership.
Example
A practice aimed to improve their bowel screening response rate.
Patient involvement: The practice team reached out to a patient who hadn’t completed their bowel screening test to ask why they hadn’t and feedback on what would encourage them to complete the test. The patient said they would have liked more guidance on how to collect their sample. The practice team asked the patient if further leaflets and video resources would be helpful. The patient agreed this idea could work and in the next PDSA cycle, the practice team signposted patients to further guides and videos hosted on their website.
Patient experience: Patients who had completed the bowel screening test were asked to rate their experiences. The ratings were lower than the practice team expected. The practice team decided to produce a fishbone diagram to try and determine the reason for the low ratings.
More information
NHS Institute for Innovation and Improvement - The patient experience book