Patient and public involvement in research means that the public have a role in influencing, designing and carrying out research.
Some of the ways to be involved are reviewing lay summaries, participating in discussions with researchers and providing advice.
Read about some of the studies that our members have been involved with:
- Developing the Developing the BEARs virtual reality training package
- Cancer Research Patient Group
- HOPE – ART (Health Observation & Patient Effect modelling for Abrogation of Radiotherapy Toxicity)
- How can we prevent frail elderly patients from losing strength following a hospital admission?
- Medicine Adherence for Patients Support (MAPS)
- Patients input into study design and protocol for ‘pill on a string’ cancer diagnostic tool
- Tinnitus study revises protocol and patient-facing documents as result of PPI feedback
If you would like to become a panel member please complete our form.
Developing the Developing the BEARs virtual reality training package
The BEARs (Both Ears) virtual reality training package is a collection of applications that are being developed for bilateral cochlear implant users.
These applications will provide sound balancing, speech-in-noise and localisation training in the virtual reality world. The team are developing a package by working with teenagers and young adults with cochlear implants, to make sure that the games are useful and fun to play.
This short video (approx. 3 minutes) explains the BEARs project.
Cancer Research Patient Group
Hear from a group of women who have been been involved in cancer research.
HOPE – ART (Health Observation & Patient Effect modelling for Abrogation of Radiotherapy Toxicity)
Amy Bates, radiographer and lead researcher for the HOPE-ART study, contacted the CUH PPI panel to ask for help with reviewing her outline research proposal.
Amy wanted to know in particular if the panel thought there was significant patient benefit – and if the approach was acceptable. She was keen to seek the panel’s views as early as possible in the proposal process to ensure that changes and modifications could be incorporated in her study.
The term prostate cancer describes a group of cancers that arise within the male prostate gland. Around 47,000 men each year are diagnosed with prostate cancer. Both surgery and radiotherapy are considered the gold standard treatment for prostate cancer dependent the stage of the cancer. Almost 90% of those diagnosed with prostate will survive 5 years or more, while 84% will survive 10 years or more. It is therefore vital that we consider the implications of not only the short-term side effects of treatment and prognosis but also the management of long-term side effects (morbidities) and impaired quality of life, both from the patients’ perspective and health economically.
The aim of the study was to develop a predictive modelling tool that combines health observations, severity of acute radiation (during treatment) toxicity and overall dosage of radiation received to predict which men are more likely to have late radiation (6 months after treatment) toxicity side effects.
Around 7% of patients experience the late radiation side effects, some of which are as a result of damage to the organs around the prostate during the radiation treatment; and can include diarrhoea, urgency, and erectile dysfunction.
This can cause significant problems for patients and lead to further treatment in the NHS. The study hopes to be able to identify men most at risk and then be able to support them more appropriately during their treatment. Knowing who those patients are will also significantly reduce the financial burden to the NHS as treatment plans can be adjusted.
The panel provided a great deal of feedback to Amy to help her explain her study rationale, also in how she might approach patients around some of the more sensitive questions, particularly concerning erectile dysfunction. Amy attended a panel meeting and gave a very clear and informative presentation followed by a Q&A. This has also helped her to prepare for presenting her work in future to funders and other lay audiences.
How can we prevent frail elderly patients from losing strength following a hospital admission?
In older frail patients, illness often causes weakness and difficulty carrying out day to day activities.
As a result, many frail people require admission to hospital because they are unable to look after themselves at home. One of the reasons frail people struggle to recover from illness might be because they lose muscle and become weaker when in hospital due to lack of activity.
The aim of this study was to investigate changes in muscle strength in frail elderly patients following a hospital admission. Peter Hartley, a physiotherapist who is leading the study, asked for support from the CUH PPI panel to help design the intervention.
With the support of PPI Coordinator they coordinated a focus group of 10 individuals from the panel. The aim of the meeting was to discuss and gain views on the overall approach of the study; how to measure changes in strength and physical ability; and the panel’s views on patients having an exercise programme in hospital.
The focus group discussion raised a number of issues around the acceptability of this type of intervention in elderly patients (over 80). Practical suggestions were made which changed the outcome measures from counting 10 repeats of a standing/sitting exercise to however many the patient could manage.
The discussion and subsequent document review allowed Peter to modify the study design and give consideration as to how to sensitively recruit patients. Again the panel could clearly see the need for this research and the support for activities to help elderly patients retain muscle strength and mobility.
Peter’s grant application was successful, and he was awarded a highly competitive Dunhill Medical Trust Research Training Fellowship award which will allow him to carry out this research over the next three years.
Medicine Adherence for Patients Support (MAPS)
A study to investigate a personalised messaging service to support and remind patients taking medication for diabetes or high blood pressure, Medicine Adherence for Patients Support (MAPS) benefited from input from the PPI panel.
The researchers had devised a series of text and voice messages to remind patients to take their medication. This intervention was created to help those who forget or needed support to adhere to a routine to take their medication.
The research team were not sure if the messages were of the right tone or if the nature of delivery would be acceptable or viewed as intrusive. Their research aimed to gather views of patients on long term medication asking them to trial the system and then attend a focus group to collect their views. Ultimately they wanted to provide evidence to support this intervention for patients who forget to take their medication.
The CUH PPI Panel were involved in reviewing the Patient Information Sheets (PIS) and Consent Forms and two individuals who already take medications long term volunteered to test run the intervention and focus group discussion.
This feedback and early testing allowed the research team to make changes to the PIS and consent forms. The feedback drew out some issues around patient confidentiality and recruitment of patients through their GP. The trial of the messaging and the test run of the focus groups helped the team to modify the intervention and provide them with valuable insights as to how they might facilitate the focus group discussion.
The aim of this input was not necessarily to change the primary outcome of the research but to ensure that their approach would optimise input and feedback from the patients taking part.
The panel were very supportive of the study, having learned that non-adherence to medication potentially costs the NHS £millions in wasted prescriptions and also compromises the health of patients often leading to other more intensive treatment.
Dr Katerina Kassavou who is leading the study was very grateful of the support and feedback she received. She also presented her work at a CUH PPI panel meeting and to the PPI oversight committee gaining exposure for the research and support from patient and public representatives.
The time allowed to gather and test the intervention happened over a 4-6 week period. The research team now have an improved Patient Information Sheet; an improved intervention with modifications to the messaging service; valuable insight to improve the focus group discussions; and were open to friendly but challenging questions which have given them the opportunity to prepare for the types of question you might receive from a funding committee or ethics board.
Patients input into study design and protocol for ‘pill on a string’ cancer diagnostic tool
Professor Rebecca Fitzgerald and team have developed a new diagnostic tool for Barrett’s Oesophagus called the cytosponge. Barrett’s oesophagus is linked with the occurrence of oesophageal cancer. The cytosponge has been extensively tested in studies with patients and healthy volunteers at the Cambridge Clinical Research Facility. The team now want to find out if the tool can be used effectively in GP surgeries, and prove if it can be used to diagnose Barrett’s oesophagus early and therefore detect patients who might be at risk of developing this cancer
The CUH PPI Panel volunteers were involved in reviewing the study design and protocol, patient information sheets and summaries, and have received feedback and updates on trial progress.
How? They met as a focus group to hear a presentation from the study data coordinator and research nurse and to provide feedback on study documents. There have been subsequent meetings to update the group on progress. The panel asked many questions including how GP surgeries were chosen and why not all GP surgeries. The team explained that GP surgeries close to endoscopy units were chosen in case of any emergencies, for example, swallowing of the capsule and string. They also need to have some GP surgeries as control groups to assess the normal level of diagnosis in the community.
Why? As a result of the focus group, patient information sheets were simplified and the ethical considerations and selection choices explained. The public group are now informed of progress and hope to retain a role in oversight for further research. The research team were hugely appreciative of the support they received and are now advocates for the early involvement of patients and the public in the research process.
Tinnitus study revises protocol and patient-facing documents as result of PPI feedback
A researcher investigating tinnitus asked volunteers on the CUH PPI panel for feedback on her project’s patient-facing documents – and as a result amended her protocol and is now looking to set up a tinnitus-specific PPI group.
Dr Marina Salorio-Corbetto, who is studying how tinnitus affects adults who use cochlear implants and the effectiveness of sound therapy in improving tinnitus symptoms, initially asked the panel to review the participant information sheet (PIS), consent form and questionnaire for her project.
This review was carried out by panel members via email and the volunteers’ feedback on their readability, coherence and phrasing helped Dr Salorio-Corbetto – who does not suffer from hearing loss – gain more understanding of what it’s like to live with this condition.
But their feedback also showed the range of difficulties experienced by those with hearing loss – and that while doctors can scientifically predict its effects, this may not accurately reflect the day-to-day reality for people living with the condition.
Dr Salorio-Corbetto took on board many of the PPI panel members’ recommendations but it also became clear to her that her research would benefit from a tinnitus-specific PPI group, including people with varying degrees of hearing loss and with symptoms of tinnitus. Dr Salorio-Corbetto now plans to set this up to help improve the sound therapy intervention and feedback on the research as it evolves.
Feedback from the panel also led to a research-protocol amendment, which Dr Salorio-Corbetto agrees has helped make her research more attractive to potential participants.
The testing sound therapy on participants was originally set to last for one day but panel members felt that this was too long – especially if those taking part did not live locally or had other things to do.
This was accepted and the protocol amended from 7 hours for the testing sound therapy to 4 hours.