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.
This case study is currently under construction - come back later!
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.