Previous PPI Work

VICI

Central serous chorio-retinopathy (CSCR) is a poorly understood eye disease. It affects the eye tissue which senses light (the retina). In CSCR fluid spontaneously gathers under the retina. This can lead to permanent vision loss in about a third of cases. Some cases resolve but some persist for years, recur or affect the second eye. The cause is unknown although it can occur in families and some genetic changes have been found. Currently there are no proven treatments for this disease, but there have been some reports of patients having a good response to treatment with a drug called eplerenone which removes the fluid under the retina. 

The VICI study is looking at the benefit of using eplerenone in the treatment of patients with CSCR. However we do not know for sure how effective this treatment is as it has not been tested in a large group of patients, and it is currently unlicensed for use in the treatment of CSCR. VICI is the first randomised, double-masked, placebo-controlled clinical trial to find out if eplerenone with usual care in CSCR is better than placebo treatment with usual care. We hope this trial will establish the first scientifically proven therapy for CSCR. CSCR is uncommon and, in order to include enough patients to provide an informative result, we are performing the study in 20 different hospitals around the United Kingdom. We aim to recruit 104 patients (52 patients allocated to each group).

Patients and NHS research support teams have helped design the study, via the James Lind Alliance Sight Loss and Vision Priority Setting Partnership (PSP). Priorities related to CSCR were considered. The research proposal has been reviewed by the RNIB and Fight for Sight and lay representatives from both charities have agreed to sit on the Trial Steering Committee for the study. Ten service users from two NHS Trusts and four CSCR patients (contacted through the RNIB database) were consulted and their feedback was very useful in determining the research questions, the outcome measures, the feasibility of recruitment, compliance with injections and laser treatment, number of trial visits, length of trial, and re-treatment strategies.

The VICI trial is funded by the NIHR-EME.

MONITOR

The Monitor group met to discuss the results of the Monitor study which was about the challenge of managing heart failure optimely.  We had put together information from existing studies and analysed anonymous data collected during NHS care for patients with heart failure. Our aim was to investigate whether a blood test could be effective in monitoring the severity of heart failure, allowing doctors to increase drugs and doses to keep the test result within a specified range. We met four patients who had heart failure and their partners. We found out that they had been diagnosed with heart failure in a haphazard way, only having had a definitive diagnosis after an unplanned hospital admission or referral to a cardiologist; their ongoing management by GPS (who are responsible for managing hearty failure in the community) is often not done systematically; and they tried to ensure follow up in specialist hospital clinics themselves.

VENOUS

Venous is planned study of a new method to revascularise the heart in patients with refractory angina. We met with five patients who had refractory angina. They were asked to reflect on their current symptoms and quality of life, uncertainty about the success of the proposed operation and the high short term risk and how they would weigh up these factors is the operation were offered to them as part of a research study. We found out that they were all interested in the proposed operation and would, in principle, consider having it.

ROSS

Some people are born with a defective heart valve. Some defective valves are identified during childhood but others only become apparent in middle age when ageing causes the vale to deteriorate more quickly.  Replacing a heart valve is a standard operation but choosing the type of replacement in a person less than 60 years old involves considering short term and long term benefits and risks. In this instance, we sought to involve patients before doing any research. We brought a group of patients who had had a valve replacement together, to find out whether research on this topic was important to them.  We were particularly interested to know how patients weighed up the different ideas of benefit and risk. We found out that participants of surgery had not had the pros and cons of different types of valve discussed with them and, on the basis of the information presented, they held quite strong preferences. These views were used in the proposal that the choice of valve is an important question to research.

OMACS 

This study uses PPI to refine some of the study documents, particularly the consent form. This is because potential OMACS patients are presented with a number of options about how they would like to take part (postal or online) and about use of their data in other projects. It is important that we make the consent form with all its options easy to use as it is being completed by participants at home (unlike most of our other studies were research nurses help the participant to understand and complete the form), and to make sure we understand the participant's wishes. The PPI group have been reviewing draft consent forms and rating their usability, as well as offering advice on how to make it easier to use.     

ADAPTT

In September 2016 we convened a group of 11 patients who are taking medications called Dual Anti-Platelet Therapy (DAPT) for their heart problem, to discuss their experiences of taking DAPT. This is for a study we are conducting called ADAPTT, which uses large nationally collected datasets to look at the levels of bleeding in patients taking DAPT. The information given to us by patients in the group has provided valuable context for our study so we can better understand and interpret the data, such as the actions patients take as a result of experiencing side-effects (particularly in relation to bleeding) and how patients interact with healthcare services as a result of those side-effects.