PPI + APEx
Patient involvement in a meta-analysis of inter-arm blood pressure difference (INTERPRESS-IPD): what’s the point?
- Cardiovascular disease is the leading global cause of death. Since most events occur in those at low to medium cardiovascular risk, recognition of novel risk markers, to refine risk prediction and to stratify treatment priorities, is important.
- A difference in blood pressure between arms is one such risk marker. We have formed the INTERPRESS Collaboration to study this: we have combined data from 24 cohorts across Europe, the USA, Africa and Southeast Asia, totalling over 57,000 patient records.
PPI Advisor Input
- 3 PPI advisors - Malcolm, Nigel, and John - contributed to all meetings and were involved in correspondence. Kate Boddy and Kristin Liabo were PPI facilitators: co-applicants to co-ordinate PPI involvement.
Pre-meetings prepared advisors for the full research meetings by reviewing and discussing relevant documents. These meetings were highly valued.
- Co-produced a plain language summary of the project to be included in the protocol document and project website.
- Revised collaborator invitation letters to emphasise data anonymisation and signposting to the protocol on PROSPERO.
- Suggested changes to the appraisal tool (QUIPS), subsequently endorsed by the project team. This was a significant impact for the project ensuring that the appraisal tool was fit for the purposes of the study.
- Ensured that a patient/end-user perspective is at the forefront of researchers’ minds whilst conducting the research.
"There have been many occasions as the project progressed when I thought our contributions added value. From the beginning, we were welcomed and involved. Other members were patient and explained technical aspects when asked, so that we did not feel inhibited to seek guidance. A particular lasting memory I carry away from the project, is how all members joined in by challenging, discussing and debating, to reach conclusions and decisions. They were thorough to the nth degree, with some participating by phone link from other countries. Fortunately, we had a chairman (CEC) who could manage it all extremely well. I know this is how it should be, but it is very satisfying and impressive to be a part of and witness." John, PPI Advisor
"My experience as an advisory group member has all been very positive. I have been made welcome at independent monitoring group meetings and feel that I have played an integral part in the process, even though my previous technical or medical knowledge and expertise was limited. I have always been encouraged to participate and query any technical words or phrases and seek clarification of my understanding at all times, both before and during meetings. Additionally, although my experience of the academic research process and terminology was limited at the start of this research programme, through attending pre-meetings and participating in training opportunities, this has not presented a problem. My contribution has always been welcomed and it has again proven easy to offer a lay-persons view at appropriate times throughout the research process and to feel valued and included.” Malcolm, PPI Advisor
Patient involvement in a screening tool of older people’s potentially inappropriate prescriptions and a screening tool to alert doctors to right treatments (STOPP START)
- STOPP (Screening tool of older people’s potentially inappropriate prescriptions) and START (Screening Tool to Alert doctors to Right Treatments) are the most widely used approaches for ensuring suitable prescribing of medicine in older adults in Europe. They help support medication reviews and give a set of suggestions in terms of reducing medication burden (STOPP) and adding potentially beneficial therapy (START).
- The aim of the STOPP/START project was to understand how, when and why the use of the STOPP/START tools improves medicines management in older people.
PPI Advisor Input
- A group of 5 older people with experience of taking multiple medicines were involved throughout the project. This group were involved at specific stages of the project.
- The project had a patient co-investigator and a patient and public involvement facilitator who sat in the core research team, to integrate patient perspectives and input from the wider PPI groups in discussions and decisions.
- Input into theories about STOPP/START and helped to prioritise which theories to review in more detail.
- Discussion and interpretation of initial findings. Influence the terminology used in the project opting for personalisation over individualisation. The group also helped to define what was meant by personalisation for the perspective of using STOPP/START.
- Co-produced plain language summary of the project.
- Advised about who to share findings with and how.
Primary care recorded mental illness among children and young people in UK before and during the COVID-19 pandemic
The mental health of many children and young people have been negatively affected by the COVID-19 pandemic. The prevalence of mental health problems has increased significantly amongst young people with approximately one in six children aged 5 to 16 reporting having a mental health problem in July 2020, compared with one in nine in 2017. Anxiety, depression and disturbances in appetite and sleep are some of the most commonly reported symptoms. Despite the easing of lockdown measures, the mental health of young people continue to be affected by the challenges related to the pandemic.
- Although surveys have identified an increase in poor mental health amongst young people, it is unclear how the pandemic has impacted the diagnoses of self-harm and mental health problems in children and young people made by general practitioners (GPs).
- Look at how many children and young people in the UK have been diagnosed with a psychiatric disorder or have self-harm recorded in their GP records, comparing the periods before and during the Covid-19 pandemic.
- Work with children and young people, parents and other key partners to develop recommendations for GPs, other healthcare services, social services, schools and colleges, on how to help children and young people with their mental health difficulties.
PPI Advisor Input
The team will work in collaboration with the McPin Foundation – a mental health research charity which specializes in involving young people with lived experience of mental health problems in research.
We intend to work with two groups throughout the project
- A children and young people’s group consisting of approximately 20 young people with mental health difficulties
- A parent/ carer group of approximately 10 people with experience of supporting a young person with mental health problems.
- The PPI groups will be involved throughout the study and will be help the research team:
- Interpret the study’s findings
- Identify areas for further analyses
- Consider the impact of the findings for healthcare and social care services, schools and universities, primary care services, children and young people and parents/carers
- Co-develop recommendations that are relevant and have the ability to be applied effectively
- Develop creative methods to share the study findings
Di-Facto: Digital Facilitation in Primary Care (Di-Facto).
- There has been a recent increase in the use of internet based services in General practice (GP) surgeries. Including the ability to book appointments, order repeat prescriptions as well as offering alternatives to face to face appointments via email and video.
- With a drive towards an increased provision of these services, it is important to understand any ‘barriers to use’ and how they might be overcome, particularly in order to ensure fairness in the provision of healthcare to different groups of people. One way to ensure this is with digital facilitation; supporting NHS patients and carers in their use of online services.
- This project aims to understand:
- How the use of internet based services are advertised and supported in GP surgeries
- The benefits and challenges of different approaches used to support internet-based services for patients and staff.
PPI Advisor Input
- 3 PPI advisors contributed to development of this project along with PPI facilitator Emma Cockcroft. Emma and Chris Marriot (Patient co-investigator) are part of the core project team.
- A group of 7 patients (including Chris) are part of a wider patient advisory group. This group has met on a number of occasions so far and will continue to meet throughout the project.
- So far we have worked with patient advisors in:
- Refining research questions for the systematic review
- Reflecting and interpreting findings from the review
- Development of surveys for GP practices and patients
- Refining methods for the qualitative research
- Developing patient facing documents
- We will continue to work with the patient advisory group throughout the project.
- Throughout the project we will be keeping track on the input from the patient advisory so that we can evaluate and report of the impact of PPI on this work and be able to share our approach with others.