This study investigated views about patient involvement and its measurement among participants with responsibility for delivering healthcare, investigating healthcare outcomes and patient benefit, and implementing and evaluating health service improvement in Denmark. We found that measurement alignment is essential for assessment, and that stakeholders should reflect on the qualities, fit, and usefulness of measures to be able to justify their choice of evaluation design, which requires recognition of conflicting stakeholder paradigms.
Patient involvement in healthcare was described as being an intrinsic part of a) the patient and their active engagement with their health problem and management, b) the professional and their actions to involve patients with their diagnosis and care plans, and c) the organization and its actions to manage the quality of healthcare services.
There was recognition that professionals have different definitions of patient involvement, opinions about measurement, and approaches to innovating patient involvement practices. It was also acknowledged that effort is required to develop a shared understanding between stakeholders about a working definition of patient involvement, its measurement, and interventions before projects or innovations in practice can be implemented. However, there was little consensus on how to measure patient involvement, what approach to measurement was meaningful, useful, or valid, and why measurement of patient involvement was needed. The indicators, measures, and measurement tools used only reflected whether the user viewed patient involvement as desirable in its own right or as a means to achieve other specific outcomes. It has been suggested that achieving acceptable assessment requires distinguishing between these two views and assessing patient involvement discretely using indicators and measurement tools that are compatible with only one view per project [30]. Some of the challenges perceived by the participants in our study were related to distinguishing between two conflicting types of evaluation strategies, i.e. generic and specific measures with different benefits and limitations. The choice of measure may become a trade-off between the two types [31], taking into consideration the risk of ending up with evaluations that are fragmented or siloed within an isolated intervention or a specific disease [32]. The indicators for measurement are usually defined by professionals working in a bio-medically oriented healthcare system with an emphasis on outcome measures [33]. It has been argued that greater emphasis should be placed on integrating patient stakeholders' perspectives to ensure measurement has meaning and relevance for them, and to capture variations in views. Acknowledging the complexity of evaluation methods may bridge the gap between healthcare professionals at different organizational levels and allow interests in research and practice to converge. A shift towards person-centred ‘cultures’ in healthcare settings should be reflected in the evaluation of processes and outcomes [34] by the increased use of qualitative or mixed method evaluations. This will foster sensitivity to the complexities of patient involvement, implementation processes, context, and system fit, and enable the evaluation of more than just effectiveness [35, 36]. This may meet the needs of participants who desired an increased focus on the meaningful implementation of measures in existing evaluation strategies, ensure successful implementation of measurement tools in clinical practice, and fulfil the request for open-source methods, tools, and guidelines on how to systematically implement patient involvement initiatives in a clinical setting [37].
This study may facilitate a debate on how to establish the criteria, outcomes, and measurement tools needed to complete successful evaluations [35]. It has been argued that evaluation of complex interventions needs to be multidimensional and contextual [38]. The complexity of the multiple constructs involved requires the interventions to be broken down into smaller components to make measurement feasible [11].
As with previous research, our findings illustrate that participants want a coherent approach to assessing patient involvement that is meaningful for those delivering services, and useful to those using and innovating healthcare, as well as those evaluating healthcare quality [36, 39, 40]. These processes should be conducted collaboratively by stakeholders so they can develop a shared understanding and generate a mutually acceptable evaluation [10]. One challenge to achieving a coherent approach to patient involvement measurement is the complexity of unpacking the core elements underpinning people’s use(s) of the term ‘patient involvement’. Although our findings illustrate that patient involvement is recognized as an important part of healthcare, this umbrella term is used to refer to a range of components (actions, perceptions, and experiences) attributable to different people engaging with healthcare (patients, professionals, and service providers), with different goals (health literacy, self-management, shared decision making, and quality improvement), explanations for its impact on healthcare delivery and experience (structural, process, and outcome measures) [9, 10, 41, 42], and opinions about interventions to innovate practice (staff, patient, and infrastructure resources).
It is likely to be helpful if the field moves away from rhetoric implying that patient involvement is a unified or simple concept, and explicitly discusses patient involvement practice, interventions, and measurement within a framework of complex interventions impacting on multiple stakeholders with different goals. Drawing on frameworks for structuring research to develop, implement, and evaluate complex interventions in healthcare, and implementing health service quality improvement initiatives are necessary steps towards developing a meaningful approach to patient involvement measurement that meets the needs of multiple stakeholders [35, 36, 43–48].
Of benefit to our study was inviting steering group members from our previous project [9] to be active collaborators on this study’s methods and analysis, and interpretation of its findings. Their experiences of patient involvement interventions and measurement varied across healthcare settings, and were informed by different disciplinary, professional, and methodological perspectives, ensuring findings are relevant to professional, researcher, and policymaker goals. Identifying the discrepancies in respective understandings of the purpose of patient involvement and measurement was seen as significant. This highlights the need for critical debate to enable researchers, healthcare professionals, and improvement managers to find common ground about measures that can show which practices, and interventions, enhance or hinder patient involvement. Furthermore, it will be important to be explicit about how and why measures are meaningful for different stakeholders at the micro, meso, and macro levels within the delivery and experience of healthcare. Many measures that have been developed and psychometrically tested for use within patient involvement interventions, and to evaluate their impact, can be integrated within healthcare to tailor care, enhance practice, and act as indicators of service quality. Our findings suggest understanding more about the active ingredients of patient involvement interventions is important to the selection and use of measures at different organizational levels. Having a theoretical framework to underpin these discussions is likely to help different stakeholders unpack what is meaningful about a measure [9, 40], what is good to use when screening for variations in quality, and how a measure complements other measures of service outcomes, patient benefit, and healthcare quality.
Future directions
It must be recognized that patient involvement is multifaceted and involves multiple stakeholders to reach consensus on how to approach and process it in an organization. The MIND-IT framework [49], in combination with the Medical Research Council’s framework [35], may be helpful in designing the evaluation of complex interventions by providing an overview of different stakeholders at the macro, meso, and micro levels and measures targeting different aspects of patient involvement. A valuable asset when co-producing multiple-stakeholder evaluation designs is knowledge of patients' and relatives’ understanding and experiences of patient involvement and use of PROMs in healthcare, and establishing a matrix may be a way to take into account the perspectives of all stakeholder groups.
Future research should focus on where and when patient involvement is happening and how patients experience involvement. Routine use of a generic measure at the micro level, e.g. the SHARED questionnaire [50] in Danish, may be appropriate when investigating within healthcare settings whether common ground can be reached between patients, health professionals delivering care, health service managers, researchers, and quality improvement leaders [9]. However, it is important to recognize that one generic measurement tool or one core set of evaluation tools is unlikely to meet the goals of all stakeholders all of the time and across all interventions [51].
Strengths and limitations
The strength of this study is its methodological rigor in illustrating differences between perspectives on patient involvement and its measurement, which is likely to impact on the implementation of measures within the Danish healthcare setting and innovate practice informed by evidence [9]. It provides in-depth data and new insights on measuring patient involvement from multiple healthcare professional stakeholder perspectives. However, the members of our sample were self-selecting, representing professionals with a specific interest in patient involvement. The main limitation was the focus on the views of professionals about patient involvement and measurement; patient perspectives were not included in this study [40]. It was noteworthy that when talking about patient involvement, participants did not discuss topics identified as being relevant to patient stakeholders, such as burden [52], disempowerment, tokenism, manipulation, or forced responsibilization [11]. This concurs with a recent study which revealed that healthcare professionals do not see patient involvement through the lens of the care they are offering, but rather as a means to improve healthcare quality [53]. However, our findings indicate a willingness to integrate patient perspectives into healthcare delivery and evaluation design, and to prioritize person-centred measures, which are the ones that matter to patients [51].