scholarly journals Measuring the outcomes of using person-generated health data: a case study of developing a PROM item bank

2019 ◽  
Vol 26 (1) ◽  
pp. e100070 ◽  
Author(s):  
Gerardo Luis Dimaguila ◽  
Kathleen Gray ◽  
Mark Merolli
Keyword(s):  
Stroke Rehabilitation ◽  
Best Practice ◽  
Patient Reported Outcome Measures ◽  
Health Condition ◽  
Health Data ◽  
Item Bank ◽  
Self Report ◽  
Development Method ◽  
Patient Reported

IntroductionPatient-reported outcome measures (PROMs) allow patients to self-report the status of their health condition or experience independently. A key area for PROMs to contribute in building the evidence base is in understanding the effects of using person-generated health data (PGHD), and using PROMs to measure outcomes of using PGHD has been suggested in the literature. Key considerations inherent in the stroke rehabilitation context makes the measurement of PGHD outcomes in home-based poststroke rehabilitation, which uses body-tracking technologies, an important use case.ObjectiveThis paper describes the development of a preliminary item bank of a PROM-PGHD for Kinect-based stroke rehabilitation systems (K-SRS), or PROM-PGHD for K-SRS.MethodsThe authors designed a method to develop PROMs of using PGHD, or PROM-PGHD. The PROM-PGHD Development Method was designed by augmenting a key PROM development process, the Qualitative Item Review, and follows PROM development best practice. It has five steps, namely, literature review; binning and winnowing; initial item revision; eliciting patient input and final item Revision.ResultsA preliminary item bank of the PROM-PGHD for K-SRS is presented. This is the result of implementing the first three steps of the PROM-PGHD Development Method within the domains of interest, that is, stroke and Kinect-based simulated rehabilitation.ConclusionsThis paper has set out a case study of our method, showing what needs to be done to ensure that the PROM-PGHD items are suited to the health condition and technology category. We described it as a case study because we argue that it is possible for the PROM-PGHD method to be used by others to measure effects of PGHD utilisation in other cases of health conditions and technology categories. Hence, it offers generalisability and has broader clinical relevance for evidence-based practice with PGHD. This paper is the first to offer a case study of developing a PROM-PGHD.

scholarly journals Enabling Better Use of Person-Generated Health Data in Stroke Rehabilitation Systems: Systematic Development of Design Heuristics

10.2196/17132 ◽  
2020 ◽  
Vol 22 (7) ◽  
pp. e17132
Author(s):  
Gerardo Luis Dimaguila ◽  
Kathleen Gray ◽  
Mark Merolli
Keyword(s):  
Stroke Rehabilitation ◽  
Information Technologies ◽  
Best Practice ◽  
Health Data ◽  
Health Information Technologies ◽  
Positive Effects ◽  
Credible Set ◽  
Remote Patient ◽  
Patient Use

Background An established and well-known method for usability assessment of various human-computer interaction technologies is called heuristic evaluation (HE). HE has been adopted for evaluations in a wide variety of specialized contexts and with objectives that go beyond usability. A set of heuristics to evaluate how health information technologies (HITs) incorporate features that enable effective patient use of person-generated health data (PGHD) is needed in an era where there is a growing demand and variety of PGHD-enabled technologies in health care and where a number of remote patient-monitoring technologies do not yet enable patient use of PGHD. Such a set of heuristics would improve the likelihood of positive effects from patients’ use of PGHD and lower the risk of negative effects. Objective This study aims to describe the development of a set of heuristics for the design and evaluation of how well remote patient therapeutic technologies enable patients to use PGHD (PGHD enablement). We used the case of Kinect-based stroke rehabilitation systems (K-SRS) in this study. Methods The development of a set of heuristics to enable better use of PGHD was primarily guided by the R3C methodology. Closer inspection of the methodology reveals that neither its development nor its application to a case study were described in detail. Thus, where relevant, each step was grounded through best practice activities in the literature and by using Nielsen’s heuristics as a basis for determining the new set of heuristics. As such, this study builds on the R3C methodology, and the implementation of a mixed process is intended to result in a robust and credible set of heuristics. Results A total of 8 new heuristics for PGHD enablement in K-SRS were created. A systematic and detailed process was applied in each step of heuristic development, which bridged the gaps described earlier. It is hoped that this would aid future developers of specialized heuristics, who could apply the detailed process of heuristic development for other domains of technology, and additionally for the case of PGHD enablement for other health conditions. The R3C methodology was also augmented through the use of qualitative studies with target users and domain experts, and it is intended to result in a robust and credible set of heuristics, before validation and refinement. Conclusions This study is the first to develop a new set of specialized heuristics to evaluate how HITs incorporate features that enable effective patient use of PGHD, with K-SRS as a key case study. In addition, it is the first to describe how the identification of initial HIT features and concepts to enable PGHD could lead to the development of a specialized set of heuristics.

scholarly journals Patient-Reported Outcome Measures of Utilizing Person-Generated Health Data in the Case of Simulated Stroke Rehabilitation: Development Method

10.2196/16827 ◽  
2020 ◽  
Vol 9 (5) ◽  
pp. e16827 ◽  
Author(s):  
Gerardo Luis Dimaguila ◽  
Kathleen Gray ◽  
Mark Merolli
Keyword(s):  
Health Care ◽  
Outcome Measures ◽  
Clinical Work ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Data ◽  
Health Conditions ◽  
Evidence Based ◽  
Development Method ◽  
Patient Reported

Background Person-generated health data (PGHD) are health data that people generate, record, and analyze for themselves. Although the health benefits of PGHD use have been reported, there is no systematic way for patients to measure and report the health effects they experience from using their PGHD. Patient-reported outcome measures (PROMs) allow patients to systematically self-report their outcomes of a health care service. They generate first-hand evidence of the impact of health care services and are able to reflect the real-world diversity of actual patients and management approaches. Therefore, this paper argues that a PROM of utilizing PGHD, or PROM-PGHD, is necessary to help build evidence-based practice in clinical work with PGHD. Objective This paper aims to describe a method for developing PROMs for people who are using PGHD in conjunction with their clinical care—PROM-PGHD, and the method is illustrated through a case study. Methods The five-step qualitative item review (QIR) method was augmented to guide the development of a PROM-PGHD. However, using QIR as a guide to develop a PROM-PGHD requires additional socio-technical consideration of the PGHD and the health technologies from which they are produced. Therefore, the QIR method is augmented for developing a PROM-PGHD, resulting in the PROM-PGHD development method. Results A worked example was used to illustrate how the PROM-PGHD development method may be used systematically to develop PROMs applicable across a range of PGHD technology types used in relation to various health conditions. Conclusions This paper describes and illustrates a method for developing a PROM-PGHD, which may be applied to many different cases of health conditions and technology categories. When applied to other cases of health conditions and technology categories, the method could have broad relevance for evidence-based practice in clinical work with PGHD.

scholarly journals Enabling Better Use of Person-Generated Health Data in Stroke Rehabilitation Systems: Systematic Development of Design Heuristics (Preprint)

2019 ◽  
Author(s):  
Gerardo Luis Dimaguila ◽  
Kathleen Gray ◽  
Mark Merolli
Keyword(s):  
Stroke Rehabilitation ◽  
Information Technologies ◽  
Best Practice ◽  
Health Data ◽  
Health Information Technologies ◽  
Positive Effects ◽  
Credible Set ◽  
Remote Patient ◽  
Patient Use

BACKGROUND An established and well-known method for usability assessment of various human-computer interaction technologies is called heuristic evaluation (HE). HE has been adopted for evaluations in a wide variety of specialized contexts and with objectives that go beyond usability. A set of heuristics to evaluate how health information technologies (HITs) incorporate features that enable effective patient use of person-generated health data (PGHD) is needed in an era where there is a growing demand and variety of PGHD-enabled technologies in health care and where a number of remote patient-monitoring technologies do not yet enable patient use of PGHD. Such a set of heuristics would improve the likelihood of positive effects from patients’ use of PGHD and lower the risk of negative effects. OBJECTIVE This study aims to describe the development of a set of heuristics for the design and evaluation of how well remote patient therapeutic technologies enable patients to use PGHD (PGHD enablement). We used the case of Kinect-based stroke rehabilitation systems (K-SRS) in this study. METHODS The development of a set of heuristics to enable better use of PGHD was primarily guided by the R3C methodology. Closer inspection of the methodology reveals that neither its development nor its application to a case study were described in detail. Thus, where relevant, each step was grounded through best practice activities in the literature and by using Nielsen’s heuristics as a basis for determining the new set of heuristics. As such, this study builds on the R3C methodology, and the implementation of a mixed process is intended to result in a robust and credible set of heuristics. RESULTS A total of 8 new heuristics for PGHD enablement in K-SRS were created. A systematic and detailed process was applied in each step of heuristic development, which bridged the gaps described earlier. It is hoped that this would aid future developers of specialized heuristics, who could apply the detailed process of heuristic development for other domains of technology, and additionally for the case of PGHD enablement for other health conditions. The R3C methodology was also augmented through the use of qualitative studies with target users and domain experts, and it is intended to result in a robust and credible set of heuristics, before validation and refinement. CONCLUSIONS This study is the first to develop a new set of specialized heuristics to evaluate how HITs incorporate features that enable effective patient use of PGHD, with K-SRS as a key case study. In addition, it is the first to describe how the identification of initial HIT features and concepts to enable PGHD could lead to the development of a specialized set of heuristics.

scholarly journals Patient-Reported Outcome Measures of Utilizing Person-Generated Health Data in the Case of Simulated Stroke Rehabilitation: Development Method (Preprint)

2019 ◽  
Author(s):  
Gerardo Luis Dimaguila ◽  
Kathleen Gray ◽  
Mark Merolli
Keyword(s):  
Health Care ◽  
Outcome Measures ◽  
Clinical Work ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Data ◽  
Health Conditions ◽  
Evidence Based ◽  
Development Method ◽  
Patient Reported

BACKGROUND Person-generated health data (PGHD) are health data that people generate, record, and analyze for themselves. Although the health benefits of PGHD use have been reported, there is no systematic way for patients to measure and report the health effects they experience from using their PGHD. Patient-reported outcome measures (PROMs) allow patients to systematically self-report their outcomes of a health care service. They generate first-hand evidence of the impact of health care services and are able to reflect the real-world diversity of actual patients and management approaches. Therefore, this paper argues that a PROM of utilizing PGHD, or PROM-PGHD, is necessary to help build evidence-based practice in clinical work with PGHD. OBJECTIVE This paper aims to describe a method for developing PROMs for people who are using PGHD in conjunction with their clinical care—<i>PROM-PGHD</i>, and the method is illustrated through a case study. METHODS The five-step qualitative item review (QIR) method was augmented to guide the development of a PROM-PGHD. However, using QIR as a guide to develop a PROM-PGHD requires additional socio-technical consideration of the PGHD and the health technologies from which they are produced. Therefore, the QIR method is augmented for developing a PROM-PGHD, resulting in the PROM-PGHD development method. RESULTS A worked example was used to illustrate how the PROM-PGHD development method may be used systematically to develop PROMs applicable across a range of PGHD technology types used in relation to various health conditions. CONCLUSIONS This paper describes and illustrates a method for developing a PROM-PGHD, which may be applied to many different cases of health conditions and technology categories. When applied to other cases of health conditions and technology categories, the method could have broad relevance for evidence-based practice in clinical work with PGHD.

scholarly journals Engagement and Participant Experiences With Consumer Smartwatches for Health Research: Longitudinal, Observational Feasibility Study (Preprint)

2019 ◽  
Author(s):  
Anna L Beukenhorst ◽  
Kelly Howells ◽  
Louise Cook ◽  
John McBeth ◽  
Terence W O'Neill ◽  
...  
Keyword(s):  
Data Collection ◽  
Knee Osteoarthritis ◽  
Patient Reported Outcomes ◽  
Health Data ◽  
Self Report ◽  
Sensor Data ◽  
Battery Life ◽  
Activity Data ◽  
Technical Problems ◽  
Patient Reported

BACKGROUND Wearables provide opportunities for frequent health data collection and symptom monitoring. The feasibility of using consumer cellular smartwatches to provide information both on symptoms and contemporary sensor data has not yet been investigated. OBJECTIVE This study aimed to investigate the feasibility and acceptability of using cellular smartwatches to capture multiple patient-reported outcomes per day alongside continuous physical activity data over a 3-month period in people living with knee osteoarthritis (OA). METHODS For the KOALAP (Knee OsteoArthritis: Linking Activity and Pain) study, a novel cellular smartwatch app for health data collection was developed. Participants (age ≥50 years; self-diagnosed knee OA) received a smartwatch (Huawei Watch 2) with the KOALAP app. When worn, the watch collected sensor data and prompted participants to self-report outcomes multiple times per day. Participants were invited for a baseline and follow-up interview to discuss their motivations and experiences. Engagement with the watch was measured using daily watch wear time and the percentage completion of watch questions. Interview transcripts were analyzed using grounded thematic analysis. RESULTS A total of 26 people participated in the study. Good use and engagement were observed over 3 months: most participants wore the watch on 75% (68/90) of days or more, for a median of 11 hours. The number of active participants declined over the study duration, especially in the final week. Among participants who remained active, neither watch time nor question completion percentage declined over time. Participants were mainly motivated to learn about their symptoms and enjoyed the self-tracking aspects of the watch. Barriers to full engagement were battery life limitations, technical problems, and unfulfilled expectations of the watch. Participants reported that they would have liked to report symptoms more than 4 or 5 times per day. CONCLUSIONS This study shows that capture of patient-reported outcomes multiple times per day with linked sensor data from a smartwatch is feasible over at least a 3-month period. INTERNATIONAL REGISTERED REPORT RR2-10.2196/10238

A case study of a patient with MS followed for 15 years using patient-reported outcome measures

2012 ◽  
Vol 10 (1) ◽  
pp. 34-38
Author(s):  
Paulette Niewczyk ◽  
Carl Granger ◽  
Carol M. Brownscheidle ◽  
Sandra DePalmo
Keyword(s):  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported

scholarly journals Treating prolonged post-concussion symptoms in a pediatric patient with the simultaneous application of cognitive behavioral therapy and subthreshold exercise: A case study

Neurology ◽  
2018 ◽  
Vol 91 (23 Supplement 1) ◽  
pp. S16.1-S16
Author(s):  
Sonal Singh ◽  
Douglas R. Polster ◽  
Meeryo Choe ◽  
Christopher Giza ◽  
Talin Babikian
Keyword(s):  
Psychological Distress ◽  
Cognitive Behavioral Therapy ◽  
Behavioral Therapy ◽  
Physical Exertion ◽  
Rating Of Perceived Exertion ◽  
Self Report ◽  
Cognitive Behavioral ◽  
Simultaneous Application ◽  
Patient Reported

ObjectiveUse a novel, simultaneously applied cognitive behavioral therapy (CBT) and subthreshold exercise treatment (STE) for a 14-year old patient with persistent post-concussion symptoms (PPCS) to facilitate a return to function in school/sport.BackgroundPatient sustained a mild TBI while playing basketball on October 29, 2016. Neurologic exam on July 7, 2017 was negative, but the patient reported PPCS, with a graded symptom checklist (GSC) score of 26. Primary symptoms were headache and anxiety in relation to cognitive and/or physical exertion. The patient attributed anxiety to anticipating the onset of symptoms after exercise.Design/methodsThe 6-week combined CBT/STE intervention included psychoeducation, cognitive restructuring, and relaxation training combined with the STE protocol. Supervised physical exertion exposure began with aerobic exercise on a stationary bike and progressed to sport-specific activity while the patient simultaneously engaged in CBT. Pre- and post-intervention data included physiologic measures (heart rate [HR] and power output [PO] on exercise bike), a subjective measure of exertion (Borg's Rating of Perceived Exertion [RPE]), and psychological self-report questionnaires.ResultsAfter 6 sessions, patient was able to engage in strenuous exercise with reduced symptom exacerbation as demonstrated by his ability to reach 175 bpm HR with 350 watts of PO with decreased reported symptoms, a significant improvement from the first session. The patient reported a decrease in anxiety and psychological distress as well as an increase in emotional and school functioning. Parent report indicated an increase in the patient's overall health, social, and emotional functioning.ConclusionsEngaging in a six-week combined CBT/STE protocol resulted in improvements in ability to tolerate physical exertion, decreases in psychological distress, and a return to function. This case study demonstrated the feasibility & positive impact of simultaneous, dual treatment model for PPCS in adolescents. It also highlighted the need to address the psychological distress that occurs in patients with PPCS.

scholarly journals Cross-cultural adaptation to Portuguese of a measure of satisfaction with participation of the Patient-Reported Outcomes Measurement Information System (PROMIS(r))

2015 ◽  
Vol 37 (2) ◽  
pp. 94-99
Author(s):  
Maria Cristina Lima e Silva ◽  
Tânia Maria da Silva Mendonça ◽  
Carlos Henrique Martins da Silva ◽  
Rogério de Melo Costa Pinto
Keyword(s):  
Information System ◽  
Cultural Adaptation ◽  
Patient Reported Outcomes ◽  
Item Bank ◽  
Self Report ◽  
Measurement Information ◽  
Outcomes Measurement ◽  
Patient Reported ◽  
Measurement Information System ◽  
The Impact

Background: Mental disorders often impair functioning in several areas of life and lead to unhappiness and suffering that may affect health-related quality of life (HRQoL). Satisfaction with participation is an indicator of HRQoL, and its measurement by patients reflects the impact of disease on their social, emotional and professional life. The Patient-Reported Outcomes Measurement Information System (PROMIS(r)) offers an item bank based on item response theory. This system provides efficient, reliable and valid self-report instruments of satisfaction with participation, a measure that is both scarce and useful in the assessment of mental disorder outcomes.Objective:To cross-culturally adapt the PROMIS(r) satisfaction with participation item bank to Portuguese.Methods:Cross-cultural adaptation followed the Functional Assessment of Chronic Illness Therapy (FACIT) multilingual translation method and was achieved through steps of forward and backward translations, review by bilingual experts (one of them a native of Portugal) and pretesting in a group of 11 adult native Brazilians. Instrument adaptation followed a universal approach to translation, with harmonization across languages.Results: Equivalence of meaning was achieved. As two of the 26 translated items, which asked about leisure and social activities, were not understood by less educated participants, an explanation in parentheses was added to each item, and the problem was solved. All items were appropriate and did not cause embarrassment to the participants.Conclusions: The satisfaction with participation item bank is culturally and linguistically suitable to be used in Brazil. After the pretest is applied in Portugal and in other Portuguese-speaking countries, the same instrument will be ready to be used in multinational studies.

Patient-reported Outcome Measures for Women with Vulvar Neoplasia – Current Situation and Future Directions

2013 ◽  
Vol 09 (02) ◽  
pp. 110
Author(s):  
Beate Senn ◽  
Manuela Eicher ◽  
Michael D Mueller ◽  
Sandra Engberg ◽  
Rebecca Spirig ◽  
...  
Keyword(s):  
Surgical Treatment ◽  
Treatment Options ◽  
Intraepithelial Neoplasia ◽  
Patient Reported Outcome Measures ◽  
Evidence Base ◽  
Patient Reported Outcome ◽  
Self Report ◽  
Vulvar Intraepithelial Neoplasia ◽  
Research Project ◽  
Patient Reported

This article discusses concerns about women with vulvar neoplasia (vulvar intraepithelial neoplasia and vulvar cancer) and the available surgical treatment options. Given the gaps in the evidence base in terms of women with vulvar neoplasia and surgical treatment the women with vulvar Neoplasia-Patient Reported Outcome (WOMAN-PRO) research project focused on complications, symptoms and associated distress of women with surgically treated vulvar neoplasia. The main results of the research project are summarised, showing complications identified by clinicians, experiences reported by patients, the newly developed WOMAN-PRO instrument and symptom occurrence of each of 31 symptoms and the degree to which symptoms distressed women during the first seven days after discharge following surgical treatment for their vulvar neoplasia. Furthermore, based on the major findings of the project, suggestions for further research and clinical practice and conclusions are presented. We conclude that including patient self-report as a major element in follow-up care has the potential to enhance the quality of supportive care.

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