Patients can report not only on their health—whether the treatment reduced their pain, for example, or if it helped them live more independently—but also on their experience of being treated—whether the treatment was properly explained, for example, or if they felt involved in decisions about their care. The umbrella term “patient-reported measures” refers to both types of reports, that come directly from the patient without interpretation by a physician or anyone else [6] and are usually collected with standardized surveys. While patient-reported outcome measures (PROMs) assess the health result of care received (e.g., symptoms, quality of life), patient-reported experience measures (PREMs) assess experiences with the delivery of care (e.g., communication with nurses and doctors, discharge coordination—see Table 1) [7].

PREMs have been increasingly collected worldwide, in clinical, economic and health services research, as well as in general assessments of health services and system performance. They have different purposes and uses at different levels. At the patient (micro) level, real-time patient feedback on experiences of care are usually collected at point-of-care, providing clinicians and other healthcare professionals with the opportunity to address concerns and improve perceptions and processes of care immediately [8]. At the institutional (meso) level, aggregated PREMs are used to drive quality improvement initiatives. They are also used to compare the performance of providers (benchmarking), to identify which care aspects insufficiently addressed, and to inform the general public to enable informed patient choice (public reporting) [9, 10]. At the national (macro) level, PREMs are used for monitoring responsiveness of health services, for reimbursement decisions and payments models, and for macro-level healthcare performance measurements, for example. The value of population level measures increases when they are linked to other surveillance data, such as clinical registries, billing and hospital discharge data.

There are quantitative and qualitative methods to measure and collect patients’ experience of care. Surveys using structured self-completed questionnaires, given or sent to patients at a single or multiple points in time, are the most common form of quantitative measures of patients’ experience. These surveys are designed to produce numerical data that can be analyzed statistically. Their emphasis is on examining patterns and trends from a large sample, providing large coverage and ability to compare, but often lacking depth because questions and response options are predetermined [9]. An important limitation of surveys is also that some patient groups are consistently underrepresented: those who do not speak the national language or with low (health) literacy and those with poor prognosis [11]. In addition, the way patients evaluate their experiences can be influenced by their socio-demographic characteristics (age, sex, income level), expectations, preferences, personality, previous experiences, as well as their health status, for instance [12]. Consequently, careful evaluation of risk adjustment strategies is required when patient experiences are compared across populations and providers.

Patients’ experiences of care can also be collected through qualitative reports, such as patient stories, complaints and compliments, focus groups or interviews. The focus of these qualitative methods is on obtaining an in-depth understanding of people’s experiences and the way they explain or interpret these [9]. However, these qualitative methods also have limitations: they require more time and expertise to collect and analyze data; they are more likely to reflect individual issues rather than more general and systematic issues; comparisons across populations and providers (e.g., hospitals) and over time are difficult to make; and results are less generalizable than quantitative results.

Reporting can include instant alerts to healthcare professionals when using real-time feedback but also public reporting on website to inform consumers and publication of these measures in quality reports. The public reporting of patients’ experiences of care is important, as it is seen as an important mechanism for “holding providers to account for the quality of care (“voice”) and for empowering patients to act as discerning consumers (“choice”)” [7].

The first option is to develop and implement a dedicated national cancer-specific measurement program collecting experiences of care. For Switzerland, two options for the instrument were identified: the Swiss cancer-specific survey from the Swiss Cancer Patient Experience (SCAPE) survey or the future OECD’s patient-reported indicators survey (PaRIS). The Swiss cancer-specific survey covering patient experiences across the care continuum was developed in 2018 for the multicenter SCAPE study in French-speaking Switzerland (www.scape-enquete.ch) [19] and later translated in German for the follow-up study SCAPE-2. The OECD’s PaRIS survey includes a PREM section covering generic and common aspects of people-centered care: accessibility, communication, shared decision-making, and continuity and coordination, as well as measures of health literacy and patient engagement and activation [20]. The stakeholders added during the dialogue that the choice of instrument depends on the potential aims of data collection. While the Swiss cancer-specific survey could be more impactful to influence clinical care through improvement initiatives, the international survey could allow international comparisons of overall care. Both instruments could be used in parallel, or combined, by developing indicators in the Swiss survey complementing those from the international survey.

The strategy of having a dedicated national measurement program on experiences of cancer care has been adopted in several countries. For instance, the annual National Cancer Patient Experience Survey (NCPES) launched by the National Health Service in England in 2010, was designed to monitor national progress on cancer care, to drive local quality improvements, to assist commissioners and providers of cancer care and to inform the work of the various charities and cancer stakeholders groups. Another example is the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Cancer Care Survey in the USA, developed between 2009 and 2016 [21], which main purpose is to support the efforts of cancer centers and oncology practices to improve the patient-centeredness of cancer care, as well as to inform decisions made by providers and patients, for instance.

The second option is to integrate the collection of PREMs within the Swiss cancer registries, which systematically collect clinical data on the type and stage of the disease and the first treatment since 2020. There was disagreement between the stakeholders around the relative importance and benefits of integrating PREMs versus PROMs. While some argued that PROMs would make more sense and would add more benefit, others argued that both were useful and fulfilling different objectives. Stakeholders discussed several areas of uncertainty, such as difficulties in merging datasets, high workload for collecting data, issues of pseudo-anonymization, legal obligations and data protection.

The strategy of collecting patient experiences through registries has been chosen in a few countries, such as Sweden which has set up over a 100 national quality registries, 40% of which collect a patient experience measure [22, 23]. Whereas the purpose is to develop and ensure the quality of care, these registries are also used for clinical research and public quality reporting. Another example comes from The Monash Partners Comprehensive Cancer Consortium (MPCCC) in Australia, currently piloting the collection of PROMs and PREMs from pancreatic cancer patients integrated within the Upper Gastrointestinal Cancer Registry [24].

The implementation of a national PREMs program or the integration of PREMs in registries should follow published guidelines and principles, such as those from the OECD [25]. The health department of New South Wales in Australia has also defined guiding principles within which patient-reported measures should operate [26]. Regarding registries, the 2020 updated AHRQ publication, “Registries for Evaluating Patient Outcomes: A User’s Guide” is a reference handbook with practical information on the design, operation, and analysis of patient registries and inclusion of patient-reported outcomes; it could be adapted to patient-reported experiences of care [27].

There are many barriers and facilitators reported in the literature for the implementation and use of patient’s experiences of care at the patient (micro), institutional (meso) and national (macro) levels, summarized in Table 2 [14, 28–33]. A recent Belgian report [29] highlighted the most important facilitators for successful PREMs implementation: a patient-centered healthcare culture supported by management and politics, awareness of the potential value of PREMs from the providers, involvement of patients in all steps, and sufficient resources. Availability and cost of human resources to collect PREMs data are also an important consideration for the implementation of PREMs, as well as consideration of privacy and ethical concerns. Moreover, an adequate IT infrastructure is needed to manage all the data, as well as the availability of people for the management and analysis of the data. The stakeholders additionally identified the following important facilitators: having simple, disease-specific and meaningful questions, using a short questionnaire tailored to patients’ literacy level, having electronic health solutions available, and having a clear objective of using results to implement change. In Switzerland, implementing a wide-scale and coordinated measurement of patient-reported experiences of cancer care would be particularly challenging because of three additional country-specific factors: Swiss federalism with the 26 cantons and 26 slightly different healthcare systems, the fragmented, complex, and mixed-financed healthcare system, as well as the need to consider three main national languages.