Editorial: Patient Experience Data and Feedback for Quality Improvement and Learning Health Systems

Patients, families, and their representative groups must be key active participants (i.e. co-designers or co-producers) of healthcare and its improvement [1-6]. As one way to achieve this, healthcare systems and services need mechanisms to capture, process, and translate user feedback — including patient experience data — into healthcare improvement activities [3, 7-11]. User feedback — either quantitative or qualitative — can be gathered through routinely available data such as patient experience surveys, complaints, and online comments, or actively solicited by providers through bedside rounding, patient narratives, and photovoice initiatives, among others [5, 12-16]. Patient experience and user feedback can serve various purposes, from consultative roles (e.g., patient and family advisory councils), service evaluation purposes (e.g., experience surveys) and as part of collaborative co-design approaches - wherein patients, families or their representative become key partners for new service delivery approaches [11, 17, 18]. Therefore, effectively leveraging user feedback can drive quality improvement (QI) activities, transformative service redesigns, and the creation and evaluation of new healthcare services, programs, or policies. Additionally, user feedback and input may also be integrated into Learning Health Systems (LHS) to support user-centred practice improvement that also drives knowledge generation and sharing [19, 20].

To realise these outcomes, user feedback must be systematically collected, processed, analysed, and relayed in a timely manner to providers, enabling real time application at the point of care [12]. This often necessitates the development, study, and implementation of systems and processes that ensure user feedback is intentionally and meaningfully utilised to enhance healthcare and its person-centeredness.

In early 2024, we issued a ‘call for papers’ for a special issue on ‘Patient Experience Data and Feedback for Quality Improvement and Learning Health Systems’, for the International Journal of Health Planning and Management. During the first phase of the two-step submission process, we received 159 abstracts from authors across five continents, including from low- and middle-income countries (LMIC). Following an initial screening based on scope, methodological quality, and diversity, a little over 10% of the abstracts were invited for a full-text submission for peer review. From the pool of submitted papers, 13 were finally accepted for publication.

Among the articles included, one focuses on a low-income nation (Democratic Republic of Congo), three examine middle-income countries (Argentina, China, and Peru), and two analyse multi-country data that includes nations with varying income levels. Seven papers addressed high-income countries, with three from the USA and one each from Australia, Canada, Italy, and Sweden.

This special issue explores various topics related to the elicitation and utilisation of patient experience data to inform codesign, quality improvement (QI), and LHS approaches, as outlined below.

This special issue highlights a continuous need for developing, testing, and implementing more effective and efficient processes to translate patient experience data into person-centred care improvements. While the issue does not encompass all possible processes for that, it does provide a valuable collection of both pragmatic and scientific insights and strategies from diverse geographic, health system, service, and developmental contexts. The findings presented here may prove valuable for health system planners, organisational and service managers, LHS and QI researchers, and other stakeholders across country contexts. The articles covered emergency care, primary care, inpatient rehabilitation, hospitals as whole, hospital-affiliated networks, regional systems, as well as national and international health systems. All of them aimed to inform the practice and further research on how to manage and use—beyond merely collecting—meaningful patient experience data.

The authors have nothing to report.