OP29 Building A Global, Public Repository Of Patient Experience Data

Abstract

Introduction

The Patient Experience, Expectations and Knowledge (PEEK) protocol was developed so that a holistic, comprehensive, independent, proactive and systematic approach could be taken to inform decisions made in the context of health technology assessment and other parts of the health sector. Each PEEK study is made publicly available which over time will result in a global repository of patient experience data.

Methods

The PEEK protocol is a single protocol that can be implemented across disease areas and includes a quantitative and qualitative component. The quantitative component is based on a series of validated tools that provide baseline health and demographic data for the study population. The qualitative component is the result of two years of protocol testing to develop a structured interview that solicits comprehensive and holistic patient experience data, and provides participants with the opportunity to provide advice on their future expectations.

Results

PEEK studies in breast cancer, bladder cancer, lung cancer, spinal muscular atrophy, atopic dermatitis, chronic kidney disease, chronic heart failure and mitochondrial disease have been completed in the Australian context (www.cc-dr.org/peek). Holistic patient experience themes are presented commencing with symptoms and diagnosis experience, through to communication, information, treatments experienced and quality of life. Information is also available in relation to participant's expectations of future treatment, care, information and communication. The result is a freely available repository of patient experience data that anyone in the sector can access to complement clinical and economic evidence.

Conclusions

The process of providing patient feedback and real-world evidence in the context of health technology assessment is often ad-hoc. The lack of consistency means that it has been difficult to assess the impact of patient engagement and feedback in the context of health technology assessment. The PEEK protocol and program is an example of a systematic, independent and holistic approach to patient experience and real-world evidence data collection that provides the sector with an opportunity to proactively engage the community in decisions that are made about treatment, care and support.