Patient and public involvement in clinical audit Kim Rezel – PPI lead, HQIP

PPI at HQIP Representatives from National Voices and the Royal colleges Found members from local organisations Word of mouth Social media I’d like to start with telling you a little about the PPI at HQIP. We asked our parent organisations firstly and found members that way, we also asked local organisations through our connections and e-bulletins, but over the years this has now spread and we have found other members by the Network talking about it in their local areas and also through our social media pages including our PPI blog

The Service User Network Meet four times a year Advisory group Initiate ideas in PPI and clinical audit Eg – How to develop a patient friendly clinical audit report Monitor the development of HQIP resources Eg – Involved in working group for online learning tools Participate in HQIP managed programmes Eg – Active steering group members of CORP, COP, NJR SUN’s influence has increased and developed over the years as they have become more experienced. Some of our members are lay auditors within their own Trusts, we have CQC inspectors, members who were involved in the Keogh review and some have key roles at national levels for example – NHS England’s clinical advisory group specialising on commissioning policy. SUN are an advisory group to HQIP, for example with the development of the How to....guide, which I will look at more later. We consult SUN with much of our new work, recently Sam from the national team came to a SUN meeting to discuss the new quality assessment tool and which they then had a chance to take away and comment on. They have sat on product development working groups eg the online learning and most recently the COP – style guide. Workshop, email etc. Members of steering groups....

Logo and picture Graphs and images here Is your graph readable to your audience? Would summary lines of text work better?

PPI pages Our pages, that are both for patients and public and for professionals working with patients.

How to – patient friendly clinical audit report The SUN wanted HQIP to help the national audit teams present their results in a less complicated and more engaging way A working group developed the short guide, benefitting from SUN consultation throughout the whole process. Two case studies were used: National Joint Registry who had recently completed their first public and patient guide Diabetes UK who were about to embark on the development of their first patient-friendly report. We were recently shortlisted for a Patient Experience Network National Award for the Access to information category based on this product. This is an example of SUN’s influence which led to this guide.

Why is it important to patients? The reports allow patients access to data and information about the treatment they may receive It empowers patients to ask questions about the care they should receive, the benefits and risks Patients can use the reports to make comparisons between standards of care The reports can provide patients with greater knowledge and give them more control over their own care

How to – patient friendly clinical audit report The results provide vital data, information and analysis relating to how care meets current standards and identifies areas for improvement. For example: THE RESULTS 54% of patients had received all nine checks STANDARD All people living with diabetes should receive nine healthcare checks each year THE CLINICAL AUDIT 2.15 million diabetes patients records were examined in 83% of GP practices in England PPI involvement can help us identify areas that need change, in the case of clinical audit reports the SUN has helped us formulate accessible ways to feedback clinical audit results.

Group discussion Do you have examples of PPI in clinical audit? What are the benefits to having patients and public involved in clinical audit? What does effective PPI look like? What do you need to do to achieve this in your own organisation? Does your organisation have the aspiration and resources to support PPI? To what level? What are the barriers? How can you overcome these? Ask the first question to the group. If they will work better in tables ask them to discuss these questions for 15 minutes and prepare to feedback to the wider group.

Benefits Patient perspective Improved outcomes Responsive to local needs Project continuation Data collecting Organisational buy-in Other benefits are: Patient perspective – It’s always great to be able to talk to patients about their ideas on what needs an audit. Junior doctors on rotation or other temporary staff may have little knowledge about the hospital or the area they’re assigned to. Through asking patients you’ll see what is important to them. If you choose an area based on their input, they’re support could be very useful throughout your project. R to local needs – Your clinical audit will be of more use to the hospital if it is responsive to local needs, an area that requires improvement. It is more likely to be followed through even after you’ve left. O. Buy-in – Do you need funding for your project? Do you need Board sign-off? Getting backing for your project can be made easier when a patient supports you. Patient stories can be more impactful and can validate your proposal. Data collecting – Working with a group of volunteers, eg a patient panel, can also mean that they can interview patients. Patients respond better to lay people rather than doctors, giving more honest responses and it helps you with your workload. Numbers don’t often present the whole story. Interviews can strengthen the results and give a different perspective. Experience measures versus outcome measures PROM/PREM. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1112988/ - A paper in BMJ about qualitative research and evidence based medicine describing how Qualitative methods can help bridge the gap between scientific evidence and clinical practice Qualitative research findings provide rigorous accounts of treatment regimens in everyday contexts This can help us understand the barriers to using evidence based medicine, and its limitations in informing decisions about treatment Recognising the limits of evidence based medicine does not imply a rejection of research evidence but awareness that different research questions require different kinds of research Prog Cont –Volunteers can help see the project through. They can ensure the recommendations from your report are put into an action plan and are implemented. Imp outcomes – By involving patients in disseminating the report, it can raise the projects profile. Patients can present the results to internal and external stakeholders that may help with funding and support to see the recommendations implemented and improve overall outcomes.

Recruiting lay memberss Patient information Posters, fliers, leaflets Open day Presentations I went to a poster competition in a London hospital a few months ago. The junior doctors had conducted extensive clinical audit projects and had produced posters summarising their methodology and results. Some of these projects were amazing in their achievements, one doctor, through their project, had reduced the number of deaths from cardiac arrests in A & E by 50%! It seems to me that that kind of accomplishment should be boasted about. Just like a shop might shout about how amazing and competitive their store is to their customers, as should hospitals boast about their success stories to their patients!

How? Clinical audit patient panels Volunteers Local groups National charities You can find patients that want to be involved through some of these ways. If you want more diversity in your patient groups go out to the communities, you have to be proactive.

Action plan to create a patient panel A copy of the How to develop a patient panel guide is available for you today and includes an action plan template to help you follow the steps needed to create an effective group.

Training for patients With SUN we developed some online training, available free on our website which is broken down into two parts. 1 – for patients to understand clinical audit at a basic level, what it is and how to understand (patient friendly) reports. 2 – 4 sessions following the CA cycle, each session ends with a quiz where you have to answer all questions correctly in order to get a certificate.

Barriers Culture Resources Clinical leadership Board support -NED & ED Finance Staff Expertise Clinical leadership Board support -NED & ED Some of the barriers which you have raised today.

Fighting off barriers with... Sticks Carrots Legal obligations Identify clinical champion(s) Strategy and policy Patient stories New NHS structure Clinicians stories CCGs Case studies HWBs HealthWatch NEDs How can we persuade management to sign off on increasing the amount of resources available for PPI? The Board – legislation Lack of time – adding it to clinical audit policy to ensure that it has to be part of your work, action plans etc. Working groups and clinical audit committees Resources – minimum funding required to start off – expenses obviously but your group will be local people not travelling far, and should be a trust priority to budget for it. Can’t find volunteers – use examples found online, posters, newsletters, flyers add to in waiting rooms, community centres, public libraries etc....don’t use the term clinical audit – Would you like to help improve your services? Training – you have to commit to doing the training in order to make the involvement effective and meaningful, don’t need to reinvent the wheel, use our resources....other websites. Takes time – yes it does, it doesn’t have to happen overnight, start small, representation on the clinical audit committee, leading up to small involvement on an audit project, to perhaps increased involvement, until representative might like to run their own audit, find volunteers to join them etc. How to start – “open day” – QI day – recruitment using brief application forms. Interview led my patients or keep it small Information governance – Worked out with HR, examples of contract and confidentiality agreements online. Can vary for each project. Your trust should already have a volunteer contract in place, use same thing. Certain policies/guidelines set in place from the beginning. Patient time – rolling recruitment, bi-annual open days, regular slot on the Trust bulletin etc.

Does it make a difference? Staley (2009) conducted review of 89 published research studies that actively involved the public in health and social care research internationally and identified a number of impacts: improving the research design and relevancy of research questions helping researchers develop ethically acceptable research improving recruitment and response rates enhancing the collection and analysis of data enhancing dissemination of findings in an accessible way to the general public Alan Simpson Professor of Collaborative Mental Health Nursing School of Health Sciences, City University London I saw this slide in a presentation from Prof Alan Simpson, although he is talking about research there are similarities when looking at questionnaire design, qualitative data collection and dissemination of results

Case studies We have also provided you with two case studies from COL and WWL as great examples of user-led audit. COL – an organisation who trains service users to go into their local organisations and conduct clinical audits.

Changing Our Lives - quote “When services have such a profound influence on the way people experience significant periods of their lives it is only right they have a real influence in shaping how these services are run.” Black Country Partnership Foundation NHS Trust Quote from a trust who worked with COL. Other notes from COL Patients involved to contribute to what change is required Patients can help in the development of the action plans and ensuring that change is supported throughout the organisation. This may be done through patient stories which can have more of an impact on commissioners and managers than a list of numbers. Patients could either present their stories, write down their stories or attend meetings to support the change that could affect their lives. “At the heart of this work is real ‘co-production’: a way of working which enables people who use services to be equal partners in the development, delivery and evaluation of services” This work ‘shifts the balance of power’ between managers/clinicians to people who use services This ‘Transparency’ provides a window into the Trust from a service user perspective This approach has buy in from ‘Board to Floor’

WWL - quote “When I attended my first audit meeting and learned that at my hospital they couldn’t reach the standards of a national audit as we didn’t have a piece of equipment and the board wouldn’t agree to purchase it, I became involved in the project and the Board had some explaining to do. We now have the correct equipment and re-audit shows that we meet the national standards. Patient Power Rules.” Wrightington, Wigan and Leigh NHS Foundation Trust – Lay audit member I want to end on two quotes from an organisation and a lay audit member. A lay member who’s influence ensured the board spent the funding required to buy equipment that would help the trust meet national standards.

Thank you www.hqip.org.uk Kim Rezel – 020 7469 2511 Kim.rezel@hqip.org.uk Please contact me if you have best practice examples that we could write up as cast studies and promote on our website, or if you have ideas around PPI that you would like to discuss.