Patient and Public Involvement and Engagement

Patient and public involvement (PPI) in Research is defined by the National Institute for Health and Care Research (NIHR) as research that is, “carried out ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them.”

The NDL programme has PPI embedded in every stage of the research process. We have adopted this approach, of including the public in a meaningful way, across all of our ACHDS projects.

PPI is key to the research we do and how we communicate our research findings.

Patient and public engagement with research is where researchers share and discuss their research with different audiences e.g., on social media, at public events or targeted community activities.

Using existing guidance^1,2 the group helped develop a PPI framework for the Networked Data Lab (NDL) projects, with the Health Foundation and the other patient and public involvement and engagement (PPI&E) leads and teams, that is used across the NDL network.

¹NIHR INVOLVE guide v1,

²Aitken et al. 2019 Consensus Statement on Public Involvement and Engagement with Data Intensive Health Research

Members of the PPIE group reviewed and gave feedback, improving the clarity and readability, of the lay summary submitted as part of the project approvals for the NDL analysis of access to children and young people’s mental health services.

Jess Butler and Will Ball, from our NDL Analytical Team, talked through the data we have available and the questions we hoped to address in an analysis of access to children and young people’s mental health (CYPMH) services in Grampian. We encouraged the group to be critical about our plans and they highlighted a number of themes they felt we should consider carefully in designing the analysis:  

• The quality of health record keeping. How complete is the data and in particular, “who are we missing out there” e.g., if data is not available for individuals. 

• “Sense-checking” results and interpretation of results with patients, relevant people and stakeholders is vital. The most important theme for the group was for us to talk to other groups to better understand the wider context so that we make meaningful interpretations, including an understanding of:
  • • what services were available (e.g., rural vs urban differences in access),
    • how easily they were accessed.

• Cautious interpretation of results especially around
  • • the impact of COVID,
    • patient’s perspective and stories,
    • the availability and access to care, and
    • for areas of social deprivation

• Support for Data linkage: the group could see the potential in a wider linkage than we can do at present e.g., linking to other data sets like education data, to give a more complete picture.

• Communication: For us to clearly define the age groups we are looking at and that our analysis is of referrals and prescriptions and is not about ‘why’ individuals were referred or received prescriptions or the scale of the mental health problems or outcomes. The group also encouraged us to define what we mean by ‘differences’ and if we mean ‘inequalities’ to use that term.

Next steps: To plan engagement with young people and /or those who care for them, for the purpose of ‘sense checking’ interpretations of our results.

Jess Butler and Will Ball, from our NDL Analytical Team, presented interim results of the analysis of access to children and young people’s mental health (CYPMH) services in Grampian ahead of presentation and discussion of the results with a group of professional stakeholders.

PPIE Partners gave:

Feedback on the presentation: 

• The concept of rate - the group suggested that people are increasingly familiar with the concept of rate (due to the pandemic?)  
• Plain English statements of results (two sentences) were really well received.  
• SIMD map: The group liked the heat maps but reminded us to be sure to always define acronyms and gave us useful terms to help explain a difficult concept.

• The group liked the simple graph. Recognising that some people just find graphs difficult to interpret. 
• The group gave suggestions for how best to explain a data table they viewed as complex for non-experts.
• The group gave us great practical feedback
  • • use graphs rather than tables but chose the simplest graph – better still use a mix of graphs and infographics
    • one graph per slide
    • give the take home message in words too
    • use higher resolution and bigger fonts

Considerations for interpretations:  

• What’s the definition of prescription?

• What about other mental health treatments?
• How come ADHD is included in mental health disorders analysis? 
• What’s the effect of parental influence?
• The findings were mostly expected except for two aspects: 

• How come people in deprived areas were prescribed more given the known issue with access to services (one of the SIMD factors)?
• 26 mental health prescriptions per 100 people in less deprived areas sound like a lot – “is it bad across”?! 

The group gave us suggestions for each of these points. The discussion highlighted for us that further/additional analysis/breakdowns of data may be needed for two reasons: 

1. To stress what’s new about this work: The overall effect may not be that surprising, but stratifications by sex/age, time trends, type of prescriptions, lengths, and new prescriptions will likely be more novel/original. 

2. To try to explain how complex the influence of socio-economic factors: Stratification by the type of SIMD factors may help to understand that complexity, for example, the impact of access to services (access to prescribers) or impact of employment in each area (related to access to assistance program). 

Who we should speak to and how: 

•  Young people would probably find the plain English statements most accessible, those supporting them would appreciate more information e.g., the maps and simple graph (less so the table) 

• We should speak to adults surrounding young people: support groups (charities), schools, non-statuary organisations (like sport groups), including those operating in more deprived areas. We should ask those people things like “What has surprised you? Does it echo your experiences? What could be done about it?” based on the types of queries this group had, it would be also important to explore with people surrounding young people, what aspects of those findings we should try to understand better (to make recommendations for future research). 
• Young people should probably be approached afterward, once the findings are refined, with one purpose “a direct response to help understand differences with age/gender etc and input on what could be done about it” 

Next steps: Present an updated output to adults supporting young people for sense-checking interpretations and implications for practice/policy.

ACHDS PPIE Partners contacted relevant people within their networks they thought might be interested in contributing to our discussion as a representative of those working closely with children and young people.

Magda Rzewuska Diaz NDL PPIE Lead, Will Ball NDL Research Fellow and Analyst, and Norman Deans and Alan Johnstone from the ACHDS PPIE Group took part in an online workshop at the Health Services Research UK Conference, in July 2021, sharing our early experiences: “Demystifying Patient and Public Involvement and Engagement in health data research: early lessons from a framework approach”. The details of the workshop are available here.   

One of our ACHDS PPIE Partners reviewed the PPIE abstract submitted to the International Population Data Linkage Network Conference in Edinburgh in Sept 2022. This is the submitted abstract and the slides presented at the conference are available here.

In January 2022 we held an online structured group discussion and a one-to-one meeting with a total of nine advocates for children and young people: Carers or parents and people working with families and children in the community. We discussed our results of the analysis of access to children and young people’s mental health (CYPMH) services in Grampian.

We combined the summary of our discussion with advocates for children and young people with the non-expert summary of the results and implications for our work. You can read the summary here.

ACHDS PPIE Partners reviewed a non-expert summary of the Grampian Networked Data Lab analysis of inequalities in access to mental health services for children and young people in Grampian. We combined this with the summary of our discussion with advocates for young people.  

From the discussions and summaries, we identified actions and potential next steps following on from this analysis e.g., what we should do with the results from this analysis, possible policy level changes and suggestions for further research.

“…need insights from young people..”

“…free access to activities for children and young people..”

“..families … need help to get the help..” 

“..don’t dismiss the needs of children and young people from less deprived areas..” 

“…schools don’t have capacity to deal with the kids ..with problems…” 

“…better mental health training for staff working directly with children and young people so they can provide better support..”

You can read the combined summaries and recommendations here.

The group encouraged us to develop some visual infographics to accompany the summary or for presenting results, and we did this for the press release when our paper was published.

Jess Butler and Will Ball, from our NDL Analytical Team, presented the results of the analysis of access to children and young people’s mental health (CYPMH) services in Grampian and the PPIE Partners gave suggestions to improve the written summary and the presentation of our results so that everyone could understand them.

The group had some follow-up questions and suggestions for next steps for this project:

• This data still must be contextualised, so it’s important to compare with national rates/other regions.
• Can we compare children in the city and urban areas?
• Why are rejection rates increased (e.g., not suitable referral, a capacity issue?)?
• The same person can be referred several times, before they get seen, is this captured/accounted for?

One person said the findings “raise more questions than they answer…and more research is important”, and here are the questions the group considered research implications of this work:

• How will these experiences affect young people in the future? If more girls are seen in specialist care while boys hide problems/don’t address/don’t ask or get help – what’s the impact?
• Important to understand why young people are referred/re-directed/rejected.
• What is the impact/relevance of a lack of school provision during pandemic on the observed trends?
• What role can school play in addressing the observed problem? Investment in schools was a recurring theme.
• Increasing children with ADHD in primary school:
  • possible justification for reviewing school starting age?
  • Do girls with ADHD present differently?
  • What happens to young people with ADHD after school age – ‘ADHD doesn’t go away’
• What is the likely role of experimenting with alcohol and drugs on those changes?
• What is the mechanism for delivering changes? What upskilling required?
• What is the likely role of a decrease in interest in sport in older girls on the observed effects?
• What about children that are missed?
• What about children at risk?

ACHDS PPIE Partner, Bārbala Ostrovska, reviewed the Health Foundation NDL Briefing Paper on the analyses of access to children and young people’s mental health services across the UK.

On behalf of the group ACHDS PPIE Partner, Bārbala Ostrovska, reviewed and contributed to our scientific article 'Inequalities in children’s mental health care: analysis of routinely collected data on prescribing and referrals to secondary care'.

You can read the paper here.

Saile Villegas and Reo Ogusu from Seeai came along to a PPIE Partner meeting and gave an overview of the proposal they were preparing for the NIHR Artificial Intelligence (AI) Award Competition 3 Stage 1 call they were applying to in collaboration with colleagues in ACHDS and NHS Grampian: Fraxpert: Evaluating an AI-supported system in detection of adult limb fractures by Emergency Medicine doctors and Radiologists.

Saille and Reo had some specific questions for the group to support the application and Alan Johnson, an ACHDS PPIE Partner reviewed the lay summary for the application. Saile and Reo’s feedback from the session was: “It was very useful and we are happy to have received such positive and supportive comments from the group.”

The overall attitude of the public group was strongly positive toward using AI as a diagnostic support tool for fracture diagnosis as many have experienced the 'pain' and 'frustration' of being misdiagnosed. They agreed that having less misdiagnosis and faster time to results will improve patient experience.

"It's not only about 'getting it right' but also about 'getting it across right'."

"Patients want to feel that they are being 'listened to'. AI can't provide that."

"It is important to get the message of 'who holds the responsibility of a diagnosis' across to the public."

Emma Tarburn is one of our ACHDS PhD students working on the MOSAICC study. Emma was drafting a participant survey “Pathway to Diagnosis in Myeloproliferative Neoplasm Patients” for her study. Emma came along to a PPIE Partner meeting and gave a quick overview of the study and explained the purpose of the survey and the kind of feedback she would like. Four of our PPIE Partners volunteered and gave really useful feedback on the wording for various questions, the format of some questions, improving the overall readability and clarity of the survey. Good luck to Emma we hope she gets a great response. 

Clarisse de Vries and Lesley Anderson from our iCAIRD team are co-supervising an MSc student, Andrew Kyeremeh, and for his project Andrew created a questionnaire “Patient views on the use of artificial intelligence for chest X-rays”. Two volunteers from the ACHDS PPIE group reviewed the questionnaire to make sure all the questions were clear and easily understood before the team asked patients attending Aberdeen Royal Infirmary for chest X-rays to complete it. Good luck with your survey Andrew!

Two colleagues from the University submitted initial applications for Centres of Doctoral Training (CDT) in early 2023 and as part of their bid development they presented their proposals to four of the ACHDS PPIE Partners for comments and feedback.

Gordon Waiter is leading an application to UKRI to create a Scotland wide CDT in AI in Medical Imaging that will last for 8 years and PPIE will be at the core of all operations.

Ed Chadwick is leading the application to the EPSRC - CDT in Bioengineering, Movement and Rehabilitation funding call.

Gordon and Ed did a great job of making the complex concepts ‘accessible’ and the group were excited by the ambition and idea of Aberdeen leading these innovative programmes, ‘heartened by both presentations and by the desire to move things forward’.

They could see definite ‘value in the multidisciplinary approach of bringing people into the same sphere’.

The Group thought an important role for the CDTs would be to build trust with all relevant users: professionals, patients, carers, public – with involvement of relevant stakeholders throughout the research process.

The PPIE Partners gave their thoughts on how to introduce students to PPIE; how to involve PPIE reps in the CDTs; how best to advertise for PPIE Partners/good ways to involve people who can be hard to reach; and how best to disseminate research findings.

Gordon and Ed both found the insights and input from the PPIE Partners really helpful in strengthening their bids.

All best wishes for success and getting through to the next round with the applications!