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#feedbacksystems

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Jan R. Boehnke

Perspectives of service providers, caregivers and adolescent patients in this study suggest that if patients are asked to complete PROMs, there is a duty of care for this information to be reviewed and acted upon:
link.springer.com/article/10.1

SpringerLink“If we ask, we must act”: co-designing the implementation of the EQ-5D-Y-5L as a Paediatric Patient Reported Outcome Measure in Routine hospital Outpatient Care for Kids to meaningfully impact clinical visits (P-PROM ROCK Phase 2) - Quality of Life ResearchPurpose To co-design use of the EQ-5D-Y-5L, a generic Paediatric Patient Reported Outcome Measure (P-PROM), in Routine Outpatient Care for Kids (ROCK), maximising its impact on patient-clinician visits. Methods This Phase 2 co-design study was guided by the co-design framework for public service design and Double Diamond model. Data collection involved facilitated workshops (building on Phase 1), followed by feedback and optimisation sessions. Participants included service providers (doctors, nurses, allied health and medical record staff), adolescents, and caregivers with lived experience of providing or receiving outpatient care at a tertiary paediatric hospital in Australia. Results Five co-design workshops, nine feedback, and two optimisation sessions were conducted with nine service providers, two adolescents, and three caregivers. Co-design participants created resources to introduce EQ-5D-Y-5L as a ‘general health tracking questionnaire’ and explain its purpose. EQ-5D-Y-5L responses were designed to be displayed by item. A display of results over time was also designed. A patient empowerment approach was taken with regards to flagging specific EQ-5D-Y-5L items for discussion with clinicians, whereby patients or caregivers control which items are flagged. To ensure clinical review and action of EQ-5D-Y-5L responses, resources, including clinician training, clinician decision support tool, and matching patient booklet and resource pathway, were co-designed. Combined, these design elements make up the P-PROM ROCK Program. Conclusion Consumer engagement produced important insights that would’ve otherwise been missed, ensuring the P-PROM ROCK Program empowers patients. For generic P-PROMs to meaningfully impact patient-clinician visits, supports and resources are required to ensure clinical review and action.
#HRQL#PatientCentered#EQ5D
*
Jan R. Boehnke

News from the IMMERSE* project:

An #ImplementationResearch agenda for experience sampling methodology as a digital clinical tool for more #PersonCentered mental health care:

cambridge.org/core/journals/ps

And a brief video about experience sampling methodology as a tool in clinical practice

youtube.com/watch?v=YbAJH-NJR1

#mHealth #HRQL #Feedback #FeedbackSystems #ImplementationScience

* Edit, link added:
immerse-project.eu/home-en/con

Cambridge CoreThe experience sampling methodology as a digital clinical tool for more person-centered mental health care: an implementation research agenda | Psychological Medicine | Cambridge CoreThe experience sampling methodology as a digital clinical tool for more person-centered mental health care: an implementation research agenda
Jan R. Boehnke

Giving participants in #HRQL or #PROM studies access to their data via accessible feedback reports is important, but providing personalized reports to many participants does not easily scale. Authors present here FRED (Feedback Reports on EMA Data)
link.springer.com/article/10.1

SpringerLinkIntroducing FRED: Software for Generating Feedback Reports for Ecological Momentary Assessment Data - Administration and Policy in Mental Health and Mental Health Services ResearchEcological Momentary Assessment (EMA) is a data collection approach utilizing smartphone applications or wearable devices to gather insights into daily life. EMA has advantages over traditional surveys, such as increasing ecological validity. However, especially prolonged data collection can burden participants by disrupting their everyday activities. Consequently, EMA studies can have comparably high rates of missing data and face problems of compliance. Giving participants access to their data via accessible feedback reports, as seen in citizen science initiatives, may increase participant motivation. Existing frameworks to generate such reports focus on single individuals in clinical settings and do not scale well to large datasets. Here, we introduce FRED (Feedback Reports on EMA Data) to tackle the challenge of providing personalized reports to many participants. FRED is an interactive online tool in which participants can explore their own personalized data reports. We showcase FRED using data from the WARN-D study, where 867 participants were queried for 85 consecutive days with four daily and one weekly survey, resulting in up to 352 observations per participant. FRED includes descriptive statistics, time-series visualizations, and network analyses on selected EMA variables. Participants can access the reports online as part of a Shiny app, developed via the R programming language. We make the code and infrastructure of FRED available in the hope that it will be useful for both research and clinical settings, given that it can be flexibly adapted to the needs of other projects with the goal of generating personalized data reports.
#FeedbackSystems
Jan R. Boehnke

Members of the #ISOQOL_CP and #ISOQOL_PE discuss three case studies from the UK, USA, Australia collated to explore how adherence to PROMs can be evaluated and understood
link.springer.com/article/10.1

Focusing on #HelthCare systems, patients, clinical teams, and #QualityImprovement in measurement, the authors derive nine key recommendations for future research and practice (Table 3):
link.springer.com/article/10.1

SpringerLinkPatient adherence to patient-reported outcome measure (PROM) completion in clinical care: current understanding and future recommendations - Quality of Life ResearchBackground Patient-reported outcome measures (PROMs) are increasingly being used as an assessment and monitoring tool in clinical practice. However, patient adherence to PROMs completions are typically not well documented or explained in published studies and reports. Through a collaboration between the International Society for Quality-of-Life Research (ISOQOL) Patient Engagement and QOL in Clinical Practice Special Interest Groups (SIGs) case studies were collated as a platform to explore how adherence can be evaluated and understood. Case studies were drawn from across a range of clinically and methodologically diverse PROMs activities. Results The case studies identified that the influences on PROMs adherence vary. Key drivers include PROMs administeration methods within a service and wider system, patient capacity to engage and clinician engagement with PROMs information. It was identified that it is important to evaluate PROMs integration and adherence from multiple perspectives. Conclusion PROM completion rates are an important indicator of patient adherence. Future research prioritizing an understanding of PROMs completion rates by patients is needed.
#ISOQOL#FeedbackSystems#PatientCentered
Jan R. Boehnke

Members of #ISOQOL_CP discuss in #QualityTALK #ImplementationScience for #HRQL research:
isoqol.org/why-proms-in-clinic

IS acknowledges dynamic relationships between individual clinicians and the wider context of the intervention (e.g., organizational context, structures, patient engagement). It is highly useful for developing PROMs and #FeedbackSystems.

The group published five articles explaining these ideas in more detail in our #FeedbackTools special issue:
link.springer.com/journal/1113

#ISOQOL
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