Patients with heart disease and who were on a waiting list for a cardiac revascularisation or heart operation in 11 English NHS Hospital Trusts were offered the opportunity to participate in a Patient Reported Outcomes (PROMs) pilot about their heart operation – the aim of which was to see if it was possible for the NHS to collect good enough information about how patients were feeling before and after their heart operation.
The reason for this pilot was so the NHS can learn more about what contributes to better outcomes for patients, and also to see if heart disease patients were willing to share this sort of information. Approximately 6000 patients agreed to participate in the pilot, and shared how they felt before their operation and, of the 6000, 4500 gave information about they felt after their operation.
The information provided by patients related to how they were feeling generally, and specifically in relation to their heart problems.
The cardiac revascularisation PROMs pilot was originally commissioned by the Department of Health in 2011. During the period of the project, responsibility was passed to NHS England in 2013.
Eleven English NHS Hospital Trusts – members of the National Cardiac Benchmarking Collaborative (NCBC) (which is a group made up of 28 UK specialist cardiac centres) were involved in the pilot. They were asked to invite patients waiting for a heart operation to join the pilot.
The NCBC team undertaking the analysis of the results and evaluation of the pilot on behalf of NHS England, are overseen by a national steering group made up of doctors, surgeons, nurses, and patient reps, and with involvement of the two main professional societies involved in cardiac treatment (Society for Cardiothoracic Surgery SCTC and British Cardiovascular Society BCVS) and NHS England.
The information from the 6000 patients who offered to help with the PROMs pilot was collected with their consent. They agreed at the start of the pilot that the information they provided about how they felt before and after their operation could be linked to other existing NHS information or data held about them. This included important information provided by patients about their general health-status and how they their heart-problems were affecting them, both before and after their operation, and whether they felt their operation was successful. No personal or identifiable information about the patients who participated in the PROMs pilot will be shared or used in the analysis or evaluation of the pilot.
This will enable a more detailed understanding of the wider things that can affect the outcomes of patients having heart-operations. The original consent form referred to the linking of the PROMs data to a number of different NHS data sets. One of the data sets that the information given to us by the patients in the PROMs forms, will be linked to the Central Cardiac Audit data set (now run by the National Institute for Cardiovascular Outcomes Research or NICOR) which collects cardiac- specific clinical information from all UK hospitals and holds them in secure registries established by the cardiovascular specialist societies. This PROM data may also be linked with mortality information sourced from the Office of National Statistics (ONS) .
Opting out of the PROMs pilot
If any patient who participated in the revascularisation PROMs pilot wishes to opt out or has any concerns, please email the PROMs team.