Assessing and reporting patient participation by means of patient preferences and experiences

Abstract

Background: Although patient participation is strongly associated with high quality of healthcare, valid means to measure and report a comprehensive notion of patient participation are scarce. The Patient Preferences for Patient Participation (4Ps) is a new healthcare practice and research tool, comprising patients' preferences as well as experiences. The 4Ps employs 12 items for the patient to conceptualise patient participation. The aim of this paper is to describe how the two perspectives of patient participation, namely preferences and experiences, can be combined to visualise and report preference-based patient participation. Methods: With four response alternatives in each section, the 4Ps offers sixteen possible combinations of degree of match per item. Theoretical and clinical principles fostered a tentative order of six ranks and three levels of preference-based patient participation. To test the standard, statistical analyses for ordinal data were performed, using data from a randomised controlled trial evaluating an intervention aiming to improve patient participation. Further, structures for visualising the preference-based patient participation of individuals and groups were suggested. Results: Data from the 4Ps demonstrated the individuals' preference-based patient participation, indicating either a match or a mismatch for each item. Mismatches represented either the experience of participation surpassing the patient's preferences, or the patient's preferences for patient participation not being established. At group level, the suggested approach for visualising and reporting the 4Ps demonstrated that the intervention group had a significantly higher proportion of sufficient preference-based patient participation for certain items than the control group. These results had not been identified earlier, when using the preferences and experiences of patient participation as separate measures.

Preference‐based patient participation for most, if not all: A cross‐sectional study of patient participation amongst persons with end‐stage kidney disease

“…The findings show a high overall degree of match between patients' preferences and experiences in terms of patient participation, especially for items such as being listened to by professionals and/or managing one's treatment. Supposedly, this indicates that the patients' engagement aligns with the conditions for participation that they, as individuals, favour 28 . This could indicate that each individual's varying needs are recognised and acknowledged by the healthcare services 2…”

Conceptualizing patient participation in psychiatry: A survey describing the voice of patients in outpatient care

“… 1 Yet, previous studies have shown that the conditions are far from optimal for preference‐based patient participation and that further efforts are needed to create an enhanced and person‐centred standard. 31 , 34 , 40 , 41 …”

Onset PrevenTIon of urinary retention in Orthopaedic Nursing and rehabilitation, OPTION—a study protocol for a randomised trial by a multi-professional facilitator team and their first-line managers’ implementation strategy

“…Further, IF teams and managers will be asked to keep notes, by means of an individual, semi-structured reflective diary [ 42 ]. Structured patient record assessment in triangulation with a post-discharge structured survey to all hip surgery patients for voiding difficulties after the hospital episode, self-care management and conditions for participating in accordance with one’s preferences—the latter using the 4Ps tool (Patient Preferences for Patient Participation) [ 43 – 45 ]. Further, data will originate from qualitative interviews with a sample of two patients per data collection point and site, representing the age range and gender distribution among those having had hip surgery.…”