Help me understand what is important to you, co-designing outcome measures that matter to people: A systematic review of the literature

Abstract

Taking many forms across contextually diverse and complex settings, models of health care delivery described as integrated, commonly share an assumption that the model will improve the individuals experience and enable the individual to be in a better position to self-manage their health and any related ongoing health care needs. Engaging with, and being focussed on, what is important to the individual patient is widely accepted as being foundational in realising the immediate and longer-term individual, population and health system benefits of an integrated model of health care delivery. However, the practice of co-designing person-level outcome measures, that reflect what matters and is valued at the individual patient level and applying these to shape and evaluate health care delivery, is not common practice. Objectives: To identify pragmatic approaches (that have been applied in real-life settings) to understanding how individuals construct their expectations and/or experiences of an integrated model of health care delivery across a range of settings. To identify how person-level outcomes, that describe issues and outcomes important to the individual, could shape the integrated model of health care delivery. To propose recommendations on the benefits and insights that person-level outcomes offer integrated model of health care delivery across a range of settings. Study selection: Peer-reviewed empirical studies published in English within the last 10 years from June 2018, set within the context of an integrated model of health care delivery, with participants being adults (18 years or greater) living in the community self-managing and/or having been exposed to the integrated model, the focus of inquiry was the perspective and/or experience of the participant and the data analysis explored the issues and outcomes important to that participant, rather than an attribute of or issues at the provider, service, or system level, were included. Search Strategy: The search of Ovid MEDLINE, EBSCO CINAHL, SCOPUS Elsevier and ProQuest Health & Medicine databases with selected key words, yielded 707 records. 38 records were added following review of reference lists. 61 duplicates removed, leaving 684 potentially relevant records. Initial screening excluded 490 records. Remaining 194 records were screened, excluding 121 records due to study design (68), participants (25), intervention (21) or not full text (7). Indepth review of the 73 records assessed as addressing the research question resulted in 19 records being omitted for study design and 49 for the phenomena of interest. A total of 5 papers were determined eligible and included in the review. Data Extraction: All eligible papers were qualitative studies, exploring the views of individuals using indepth interviews and focus groups. The studies originated from United Kingdom (2), Australia (1), Netherlands (1) and USA (1). Participants were all community living adults, with sample size ranging from 23 to 230. As the aim of the review was to capture how information was collected, how it was applied and the potential significance, a bespoke data extraction tool was developed. Data Synthesis and key findings: A descriptive synthesis was undertaken, and a detailed narrative summary of the key findings will be presented.

Keywords

• person-level outcome
• literature review
• integrated care
• community living
• adults