Including patient perspectives in health technology assessments supplements clinical findings and provides valuable information for health services design and delivery

Robertson C1, Shimonovich M1, Sharma P1, Fraser C1, Hernández R2, MacLennan G1, Jamieson R3, Vallabhaneni S4, Brazzelli M1
1Health Services Research Unit, University of Aberdeen, 2Health Economics Research Unit, University of Aberdeen, 3The Royal Infirmary of Edinburgh, 4Royal Liverpool University Hospital

Background:

Public involvement in health technology assessment (HTA) projects and other systematic reviews is increasingly recognised as being an essential component of the entire research process, but how that involvement is reflected in the published reports of individual projects varies widely.

Objectives:

We describe our experience of involving two members of the public in a complex HTA assessing the clinical and cost-effectiveness of surveillance imaging following endovascular abdominal aortic repair (EVAR).

Methods:

This was a systematic review of randomised and non-randomised studies of diagnostic imaging technologies in adults undergoing surveillance following EVAR for abdominal aortic aneurysm (AAA). Currently, no patient support groups solely targeting EVAR patients exist. Two patient representatives who were currently undergoing EVAR surveillance were, therefore, recruited from the NHS Scottish Health Research Register (SHARE) to become project advisors. The patient representatives attended face-to-face and telephone meetings where they were able to comment on the project and share their personal, lived experiences of being a patient undergoing EVAR surveillance.

Results:

Two non-randomised comparative studies and 25 cohort studies were identified for inclusion in our review. Data reported in these studies included clinical outcomes, such as mortality and re-intervention rates. By contrast, the patient representatives described patient-centred issues, such as anxiety, continuity of care, and the quality of patient and health professional communication. In our HTA report, we supplemented the clinical information provided by the studies included in the systematic review with the patient perspective data, with the aim of informing clinical practice. The patient representatives were also involved in contributing to writing the plain language summary.

Conclusions:

Identifying members of the public to become advisors to our project was challenging and time consuming; however, both patient representatives provided data that supplemented the HTA project findings and provided invaluable insights for those who design and deliver EVAR surveillance protocols.

Patient or healthcare consumer involvement: