Frequently asked questions
We have put together a list of the most common questions we get asked. If there are any others you can think of that we may have missed then email us.
- Where do I start?
- Where can I learn more about public involvement?
- What are the benefits of patient, carer and public involvement and engagement?
- What’s the best method for involving or engaging patients, carers and the public?
- Where do I find people to involve or to come to my engagement event?
- Where can I find more data on current patient experience?
- Who can help me?
- Payment – what rates should be offered for involvement?
- Where do I find the money to pay for involvement?
- Is there a minimum number of patients who must be included?
- How do I get involved?
- What events can I attend?
1. Where do I start?
Patient, carer and public involvement and engagement can seem quite daunting and it can be easy to feel rushed into putting a patient representative onto a group or running a focus group without really thinking about what you’re trying to get from the involvement or engagement.
What is the insight you’re hoping to get from the involvement? What are you hoping to communicate through the engagement? Be clear on purpose because the input will determine the output. The 4PI National Involvement Standard can be a really helpful place to begin if you’re just starting out. Please get in touch if you need help and we’ll happily try to point you in the right direction.
2. Where can I learn more about public involvement?
The King’s Fund published a great document on the state of involvement in the NHS in December 2014 called People in control of their own health and care which can be helpful in understanding the many facets of involvement in health and care. NIHR’s INVOLVE have some great information about public involvement in research. If you’re interested in better understanding the theory around public involvement generally then it’s worth starting with Arnstein’s Ladder of Citizen Participation.
3. What are the benefits of patient, carer and public involvement and engagement?
We believe that improvements in health and care need to be rooted in the needs and experiences of our population – patients, families, carers and the public. We believe that the best articulation of these clinical, behavioural and emotional needs and experiences comes from our population working in partnership with us.
Evidence shows that meaningful partnership with our population and patients is the way to translate cutting-edge research and innovation into measureable health and wealth gains for patients and populations.
Partnering with patients, carers and the wider population:
a) Is much more efficient:
- By having patients involved from the start, you end up with an improvement that all users are engaged in and feel meets the need for improvement
- Retrospective feedback can lead to creating an improvement that isn’t focused on what all users need.
b) Creates a culture of wanting to understand what matters most:
- Generates patient and carer interest in being involved (not just a tick box activity)
- Being receptive to feedback breeds more receptivity.
There is also strong evidence that demonstrates the benefit of involvement and engagement:
- Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. (2012) The impact of patient and public involvement on UK NHS health care: a systematic review. International Journal for Quality in Health Care Volume 24, Issue 1 pp. 28-38.
- Berger et al (2013) Promoting engagement by patients and families to reduce adverse events in acute care settings: a systematic review. BMJ Quality & Safety 2014;23:548-555 doi:10.1136/bmjqs-2012-001769
- Doyle C, Lennox L, Bell D. (2013) A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open 2013;3:e001570 doi:10.1136/bmjopen-2012-001570
- Kötter T, Schaefer FA, Scherer M, Blozik E (2013) Involving patients in quality indicator development – a systematic review. Patient Preference and Adherence 7: 259-268
- We make extensive use of three significant journals particularly focused on patient experience and involvement evidence: Health Expectations, Patient Experience Journal, and Research Involvement and Engagement. As you can see from the above there’s also lots of evidence in the British Medical Journal, the Journal of the America Medical Association, and other quality-focused journals as well as disease-specific journals.
4. What’s the best method for involving or engaging patients, carers and the public?
It depends on the purpose (see Question 1 – where do I start?) and what you mean by involvement or engagement. The King’s Fund published a excellent document on the state of involvement in the NHS in December 2014 called People in control of their own health and care which can be helpful in working out what kind of involvement or engagement you might be trying to undertake.
There are lots of methods and they all come with different pros and cons – there is no silver bullet or one-size-fits-all method. Get in touch with the team if you’re interested in having a look at various toolkits for involvement. It is worth talking to your local involvement lead who will have local policies and methodologies.
If what you are trying to do is about understanding patient experience then our preferred guidance on what to do and use is The Health Foundation’s Evidence Scan on Measuring Patient Experience (2013). This outlines the evidence for some of the more well-known methods and has a particularly useful chart on page 27 that summarises the pros and cons of these.
Some common methodologies are listed below, we hope to soon link these to helpful case studies of each of these:
- In-depth interviews
- Focus groups and panels
- Narrative stories
- Complaints and compliments
- Online rating tools
- Video ethnography
- Experience based co-design
- Journey or process mapping
5. Where do I find people to involve or to come to my engagement event?
- Trust patient involvement groups and involvement leads
- Council of governors and members (for foundation trusts)
- Other local or regional advisory groups – relating to local/regional forum
- Recruitment in clinics and through clinicians
- GP practice Patient Participation Groups
- Community organisations and groups (talk to us about local community groups we’re already collaborating with)
- Health and Wellbeing Boards
- Clinical Commissioning Groups
- Online communities (HealthUnlocked, MumsNet, MyHealthLondon – set up by NHS England (London), NHS Citizen, Talk London – set up by the Greater London Authority, People in Research)
6. Where can I find more data on current patient experience?
- Patient Advice and Liaison Services (PALS) at your local hospital
- Complaints and compliments
- Local feedback
- Family and friends test qualitative feedback
- Any other local ‘real-time feedback’ responses
- National surveys: Inpatient survey, Cancer patient experience survey, Maternity survey, Community mental health survey, Children and young people’s survey, Accident and emergency survey, Ambulance survey of hear and treat callers (2013/14), Outpatient survey (last done in 2011), GP survey
7. Who can help me?
8. Payment – what rates should be offered for involvement?
The link to our policy outlining the reimbursement and recognition of time for patient partners involved in our work is on our resources page. NIHR’s INVOLVE have some great guidance and information on what to think about when developing a payment or reimbursement policy and even have a calculator for working out your budget for involvement work.
9. Where do I find the money to pay for involvement?
We find the best answer is to build the costs for involvement into bids for work or research grant applications. If you need help working out what those costs might be then look at Question 8 on payment. Encouraging teams to see the involvement or engagement costs as having a long-term benefit can be challenging but there’s lots of evidence that this is the case (see Question 3 on the benefits of involvement and engagement).
10. Is there a minimum number of patients who must be included?
No. It is all about what the purpose is and, on that basis, how many (and what kind) of people you need to involve to get the insight you are interested in.
11. How do I get involved?
Go to our getting involved page for more details.
12. What events can I attend?
Most UCLPartners events are open to all staff, patients and public with an interest in the topic and some of our events actively encourage patient, carer and public attendance through bursaries and covering expenses (see our policy for more details). These events will be clearly flagged. View all our events.
We run a quarterly forum for our Involvement Leads Network members but the masterclasses are open to anyone and we very much encourage attendance from anyone with an interest in the topics we cover.