The Language of Equity in Digital Health: Prioritizing the Needs of Limited English Proficient Communities in the Patient Portal 2.0

BACKGROUND Recurrent hospital visits were potential risk factors for COVID-19 contagion. OBJECTIVE The aims of this prospective observational study was to analyze the consequences of COVID-19 pandemic in the health care of patients with lymphoma and the impact of telemedicine strategies such as the patient portal in their management. METHODS All data were obtained from the electronic medical record (EMR). Variables such as age, sex, matter of the visit, use of patient’s portal, changes in management, impact in clinical trials and suffering from COVID-19 contagion were recorded. RESULTS 290 patients were attended in the lymphoma clinic accomplishing 437 appointments. The median age was 66 years (range 18-94), and 157 (54.13%) were male. Of them, 109 out of 290 (37.58%) were aged older then 70 years. Regarding number of visits, 214 patients (73.79%) had only 1 visit to the hospital. Only 23 patients (7.93%) didn’t have access to patient’s portal. During the follow-up, only 7 patients (2.41%) suffered from COVID-19, with a median age of 66 years (51-80). CONCLUSIONS Telemedicine such as patient’s portal are feasible strategies in the management of patients with lymphoma during the COVID-19 pandemic, with a reduction of in-person visits to hospital and a very low contagion rate. This experience allowed us to continue with a new digital health strategy in the follow up of patients with hematologic malignancies. CLINICALTRIAL Not registered.

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The State of Evidence in Patient Portals: Umbrella Review (Preprint)

10.2196/preprints.23851 ◽

2020 ◽

Author(s):

Marcy G Antonio ◽

Olga Petrovskaya ◽

Francis Lau

Keyword(s):

Knowledge Translation ◽

Systematic Reviews ◽

Business Models ◽

Digital Health ◽

Patient Portal ◽

Umbrella Review ◽

Patient Portals ◽

Meta Level ◽

Patient Reported ◽

Over Time

BACKGROUND Patient portals have emerged as a recognized digital health strategy. To date, research on patient portals has grown rapidly. However, there has been limited evaluation of the growing body of evidence on portal availability, use, clinical or health behavior and outcomes, and portal adoption over time. OBJECTIVE This paper aims to comprehensively consolidate the current state of evidence on patient portals using the umbrella review methodology, introduce our approach for evaluating evidence for quantitative and qualitative findings presented in included systematic reviews, and present a knowledge translation tool that can be used to inform all stages of patient portal adoption. METHODS For this study, a modified version of the Joanna Briggs Institute umbrella review method was used. Multiple databases were searched for systematic reviews focused on patient portals, and the final sample included 14 reviews. We conducted a meta-level synthesis of findings from quantitative, qualitative, and mixed methods primary studies reported in systematic reviews. We organized the umbrella review findings according to the Clinical Adoption Meta-Model (CAMM). Vote-counting, GRADE (Grading of Recommendations, Assessment, Development, and Evaluations), and CERQual (Confidence in the Evidence from Review of Qualitative Research) were used to assess the umbrella review evidence. RESULTS Our knowledge translation tool summarizes the findings in the form of an evidence map. Organized by the CAMM categories, the map describes the following factors that influence portal adoption and effects over time: patient contexts, patient's interest and satisfaction, portal design, facilitators and barriers, providers' attitudes, service utilization, behavioral effects, clinical outcomes, and patient-reported outcomes. The map lists the theories and mechanisms recognized in the included portal research while identifying the need for business models and organizational theories that can inform all stages of portal adoption. Our GRADE and CERQual umbrella review evaluation resulted in the majority of evidence being rated as moderate to low, which reflects methodological issues in portal research, insufficient number of studies, or mixed results in specific focus areas. The 2 findings with a high rating of evidence were patients' interest in using portals for communication and the importance of a simple display of information in the portals. Over 40 portal features were identified in the umbrella review, with communication through secure messaging and appointment booking mentioned in all systematic reviews. CONCLUSIONS Our umbrella review provides a meta-level synthesis to make sense of the evidence on patient portals from published systematic reviews. Unsystematic and variable reporting of portal features undermines the ability to evaluate and compare portal effects and overlooks the specific context of portal use. Research designs sensitive to the social, organizational, policy, and temporal dimensions are needed to better understand the underlying mechanisms and context that leverage the identified factors to improve portal use and effects.

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Feasibility of an Interactive Patient Portal for Monitoring Physical Activity, Remote Symptom Reporting, and Patient Education in Oncology: Qualitative Study (Preprint)

10.2196/preprints.15539 ◽

2019 ◽

Author(s):

Michael Marthick ◽

Anna Janssen ◽

Birinder S Cheema ◽

Jennifer Alison ◽

Tim Shaw ◽

...

Keyword(s):

Physical Activity ◽

Digital Health ◽

Symptom Reporting ◽

Patient Portal ◽

Semistructured Interview ◽

Web Portal ◽

Patient Portals ◽

Web Based ◽

Qualitative Thematic Analysis ◽

The Web

BACKGROUND Digital health interventions, such as the use of patient portals, have been shown to offer benefits to a range of patients including those with a diagnosis of cancer. OBJECTIVE This study aimed to explore the participant experience and perception of using an interactive Web-based portal for monitoring physical activity, remote symptom reporting, and delivering educational components. METHODS Participants who were currently under treatment or had recently completed intensive treatment for cancer were recruited to three cohorts and invited to join a Web-based portal to enhance their physical activity. Cohort 1 received Web portal access and an activity monitor; cohort 2 had additional summative messaging; and cohort 3 had additional personalized health coaching messaging. Following the 10-week intervention, participants were invited to participate in a semistructured interview. Interview recordings were transcribed and evaluated using qualitative thematic analysis. RESULTS A total of 17 semistructured interviews were carried out. Participants indicated that using the Web portal was feasible. Personalized messaging improved participant perceptions of the value of the intervention. There was a contrast between cohorts and levels of engagement with increasing health professional contact leading to an increase in engagement. Educational material needs to be tailored to the participants’ cancer treatment status, health literacy, and background. CONCLUSIONS Participants reported an overall positive experience using the Web portal and that personalized messaging positively impacted on their health behaviors. Future studies should focus more on design of interventions, ensuring appropriate tailoring of information and personalization of behavioral support messaging.

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The State of Evidence in Patient Portals: Umbrella Review

Journal of Medical Internet Research ◽

10.2196/23851 ◽

2020 ◽

Vol 22 (11) ◽

pp. e23851

Author(s):

Marcy G Antonio ◽

Olga Petrovskaya ◽

Francis Lau

Keyword(s):

Knowledge Translation ◽

Systematic Reviews ◽

Business Models ◽

Digital Health ◽

Patient Portal ◽

Umbrella Review ◽

Patient Portals ◽

Meta Level ◽

Patient Reported ◽

Over Time

Background Patient portals have emerged as a recognized digital health strategy. To date, research on patient portals has grown rapidly. However, there has been limited evaluation of the growing body of evidence on portal availability, use, clinical or health behavior and outcomes, and portal adoption over time. Objective This paper aims to comprehensively consolidate the current state of evidence on patient portals using the umbrella review methodology, introduce our approach for evaluating evidence for quantitative and qualitative findings presented in included systematic reviews, and present a knowledge translation tool that can be used to inform all stages of patient portal adoption. Methods For this study, a modified version of the Joanna Briggs Institute umbrella review method was used. Multiple databases were searched for systematic reviews focused on patient portals, and the final sample included 14 reviews. We conducted a meta-level synthesis of findings from quantitative, qualitative, and mixed methods primary studies reported in systematic reviews. We organized the umbrella review findings according to the Clinical Adoption Meta-Model (CAMM). Vote-counting, GRADE (Grading of Recommendations, Assessment, Development, and Evaluations), and CERQual (Confidence in the Evidence from Review of Qualitative Research) were used to assess the umbrella review evidence. Results Our knowledge translation tool summarizes the findings in the form of an evidence map. Organized by the CAMM categories, the map describes the following factors that influence portal adoption and effects over time: patient contexts, patient's interest and satisfaction, portal design, facilitators and barriers, providers' attitudes, service utilization, behavioral effects, clinical outcomes, and patient-reported outcomes. The map lists the theories and mechanisms recognized in the included portal research while identifying the need for business models and organizational theories that can inform all stages of portal adoption. Our GRADE and CERQual umbrella review evaluation resulted in the majority of evidence being rated as moderate to low, which reflects methodological issues in portal research, insufficient number of studies, or mixed results in specific focus areas. The 2 findings with a high rating of evidence were patients' interest in using portals for communication and the importance of a simple display of information in the portals. Over 40 portal features were identified in the umbrella review, with communication through secure messaging and appointment booking mentioned in all systematic reviews. Conclusions Our umbrella review provides a meta-level synthesis to make sense of the evidence on patient portals from published systematic reviews. Unsystematic and variable reporting of portal features undermines the ability to evaluate and compare portal effects and overlooks the specific context of portal use. Research designs sensitive to the social, organizational, policy, and temporal dimensions are needed to better understand the underlying mechanisms and context that leverage the identified factors to improve portal use and effects.

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Interactive Digital Health Tools to Engage Patients and Caregivers in Discharge Preparation: Implementation Study

Journal of Medical Internet Research ◽

10.2196/15573 ◽

2020 ◽

Vol 22 (4) ◽

pp. e15573 ◽

Cited By ~ 1

Author(s):

Theresa E Fuller ◽

Denise D Pong ◽

Nicholas Piniella ◽

Michael Pardo ◽

Nathaniel Bessa ◽

...

Keyword(s):

Text Messaging ◽

Medical Center ◽

Digital Health ◽

Academic Medical Center ◽

Care Team ◽

Patient Portal ◽

Implementation Barriers ◽

Secure Messaging ◽

Patient Admissions ◽

Patient Reported

Background Poor discharge preparation during hospitalization may lead to adverse events after discharge. Checklists and videos that systematically engage patients in preparing for discharge have the potential to improve safety, especially when integrated into clinician workflow via the electronic health record (EHR). Objective This study aims to evaluate the implementation of a suite of digital health tools integrated with the EHR to engage hospitalized patients, caregivers, and their care team in preparing for discharge. Methods We used the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework to identify pertinent research questions related to implementation. We iteratively refined patient and clinician-facing intervention components using a participatory process involving end users and institutional stakeholders. The intervention was implemented at a large academic medical center from December 2017 to July 2018. Patients who agreed to participate were coached to watch a discharge video, complete a checklist assessing discharge readiness, and request postdischarge text messaging with a physician 24 to 48 hours before their expected discharge date, which was displayed via a patient portal and bedside display. Clinicians could view concerns reported by patients based on their checklist responses in real time via a safety dashboard integrated with the EHR and choose to open a secure messaging thread with the patient for up to 7 days after discharge. We used mixed methods to evaluate our implementation experience. Results Of 752 patient admissions, 510 (67.8%) patients or caregivers participated: 416 (55.3%) watched the video and completed the checklist, and 94 (12.5%) completed the checklist alone. On average, 4.24 concerns were reported per each of the 510 checklist submissions, most commonly about medications (664/2164, 30.7%) and follow-up (656/2164, 30.3%). Of the 510 completed checklists, a member of the care team accessed the safety dashboard to view 210 (41.2%) patient-reported concerns. For 422 patient admissions where postdischarge messaging was available, 141 (33.4%) patients requested this service; of these, a physician initiated secure messaging for 3 (2.1%) discharges. Most patient survey participants perceived that the intervention promoted self-management and communication with their care team. Patient interview participants endorsed gaps in communication with their care team and thought that the video and checklist would be useful closer toward discharge. Clinicians participating in focus groups perceived the value for patients but suggested that low awareness and variable workflow regarding the intervention, lack of technical optimization, and inconsistent clinician leadership limited the use of clinician-facing components. Conclusions A suite of EHR-integrated digital health tools to engage patients, caregivers, and clinicians in discharge preparation during hospitalization was feasible, acceptable, and valuable; however, important challenges were identified during implementation. We offer strategies to address implementation barriers and promote adoption of these tools. Trial Registration ClinicalTrials.gov NCT03116074; https://clinicaltrials.gov/ct2/show/NCT03116074.

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Feasibility of an Interactive Patient Portal for Monitoring Physical Activity, Remote Symptom Reporting, and Patient Education in Oncology: Qualitative Study

JMIR Cancer ◽

10.2196/15539 ◽

2019 ◽

Vol 5 (2) ◽

pp. e15539 ◽

Cited By ~ 3

Author(s):

Michael Marthick ◽

Anna Janssen ◽

Birinder S Cheema ◽

Jennifer Alison ◽

Tim Shaw ◽

...

Keyword(s):

Physical Activity ◽

Digital Health ◽

Symptom Reporting ◽

Patient Portal ◽

Semistructured Interview ◽

Web Portal ◽

Patient Portals ◽

Web Based ◽

Qualitative Thematic Analysis ◽

The Web

Background Digital health interventions, such as the use of patient portals, have been shown to offer benefits to a range of patients including those with a diagnosis of cancer. Objective This study aimed to explore the participant experience and perception of using an interactive Web-based portal for monitoring physical activity, remote symptom reporting, and delivering educational components. Methods Participants who were currently under treatment or had recently completed intensive treatment for cancer were recruited to three cohorts and invited to join a Web-based portal to enhance their physical activity. Cohort 1 received Web portal access and an activity monitor; cohort 2 had additional summative messaging; and cohort 3 had additional personalized health coaching messaging. Following the 10-week intervention, participants were invited to participate in a semistructured interview. Interview recordings were transcribed and evaluated using qualitative thematic analysis. Results A total of 17 semistructured interviews were carried out. Participants indicated that using the Web portal was feasible. Personalized messaging improved participant perceptions of the value of the intervention. There was a contrast between cohorts and levels of engagement with increasing health professional contact leading to an increase in engagement. Educational material needs to be tailored to the participants’ cancer treatment status, health literacy, and background. Conclusions Participants reported an overall positive experience using the Web portal and that personalized messaging positively impacted on their health behaviors. Future studies should focus more on design of interventions, ensuring appropriate tailoring of information and personalization of behavioral support messaging. International Registered Report Identifier (IRRID) RR2-10.2196/9586

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Defining Empowerment and Supporting Engagement Using Patient Views From the Citizen Health Information Portal: Qualitative Study (Preprint)

10.2196/preprints.8828 ◽

2017 ◽

Author(s):

Tracie Risling ◽

Juan Martinez ◽

Jeremy Young ◽

Nancy Thorp-Froslie

Keyword(s):

Qualitative Methodology ◽

Digital Health ◽

Patient Empowerment ◽

Primary Objective ◽

Patient Portal ◽

Interpretive Description ◽

Patient Portals ◽

Information Portal ◽

Use Of Technology ◽

Self Reported Health Status

BACKGROUND The increasing presence of technology in health care has created new opportunities for patient engagement and with this, an intensified exploration of patient empowerment within the digital health context. While the use of technology, such as patient portals, has been positively received, a clear linkage between digital health solutions, patient empowerment, and health outcomes remains elusive. OBJECTIVE The primary objective of this research was to explore the views of participants enrolled in an electronic health record portal access trial regarding the resultant influence of this technology on their feelings of patient empowerment. METHODS The exploration of patient empowerment within a digital health context was done with participants in a tethered patient portal trial using interpretive description. Interpretive description is a qualitative methodology developed to pragmatically address clinical health questions. Patient demographics, self-reported health status, and self-identified technology adaptation contributed to the assessment of empowerment in this qualitative approach. RESULTS This research produced a view of patient empowerment within the digital health context summarized in two overarching categories: (1) Being Heard and (2) Moving Forward. In each of these, two subcategories further delineate the aspects of empowerment, as viewed by these participants: Knowing More and Seeing What They See under Being Heard, and Owning Future Steps and Promoting Future Care under Moving Forward. This work also highlighted an ongoing interconnectedness between the concepts of patient empowerment, engagement, and activation and the need to further articulate the unique aspects of each of these. CONCLUSIONS The results of this study contribute needed patient voice to the ongoing evolution of the concept of patient empowerment. In order to move toward more concrete and accurate measure of patient empowerment and engagement in digital health, there must be further consideration of what patients themselves identify as essential aspects of these complex concepts. This research has revealed relational and informational elements as two key areas of focus in the ongoing evolution of patient empowerment operationalization and measure.

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Putting the social back into sociotechnical: Case studies of co-design in digital health

Journal of the American Medical Informatics Association ◽

10.1093/jamia/ocaa197 ◽

2020 ◽

Author(s):

Chrysanthi Papoutsi ◽

Joseph Wherton ◽

Sara Shaw ◽

Clare Morrison ◽

Trisha Greenhalgh

Keyword(s):

Heart Failure ◽

Case Studies ◽

Digital Health ◽

Scale Up ◽

Patient Portal ◽

Healthcare Staff ◽

Clinical Practices ◽

Field Notes ◽

Technology Users ◽

Cross Case Analysis

Abstract Objective We sought to examine co-design in 3 contrasting case studies of technology-supported change in health care and explain its role in influencing project success. Materials and Methods Longitudinal case studies of a seizure detection and reporting technology for epilepsy (Southern England, 2018-2019), a telehealth service for heart failure (7 UK sites, 2016-2018), and a remote video consultation service (Scotland-wide, 2019-2020). We carried out interviews with 158 participants and collected more than 200 pages of field notes from observations. Within- and cross-case analysis was informed by sociotechnical theory. Results In the epilepsy case, co-design prioritized patient-facing features and focused closely around a specific clinic, which led to challenges with sustainability and mainstreaming. In the heart failure case, patient-focused co-design produced an accessible and usable patient portal but resulted in variation in uptake between clinical sites. Successful scale-up of video consultations was explained by a co-design process involving not only the technical interface, but also careful reshaping of work practices. Discussion A shift is needed from co-designing with technology users to co-designing with patients as service users, and with healthcare staff as professionals. Good co-design needs to involve users, including those who engage with the technology-supported service bothdirectly and indirectly. It requires sensitivity to emergence and unpredictability in complex systems. Healthcare staff need to be supported to accommodate iterative change in the service. Adequate resourcing and infrastructures for systems-focused co-design are essential. Conclusions If co-design focuses narrowly on the technology, opportunities will be missed to coevolve technologies alongside clinical practices and organizational routines.

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Interactive Digital Health Tools to Engage Patients and Caregivers in Discharge Preparation: Implementation Study (Preprint)

10.2196/preprints.15573 ◽

2019 ◽

Author(s):

Theresa E Fuller ◽

Denise D Pong ◽

Nicholas Piniella ◽

Michael Pardo ◽

Nathaniel Bessa ◽

...

Keyword(s):

Text Messaging ◽

Medical Center ◽

Digital Health ◽

Academic Medical Center ◽

Care Team ◽

Patient Portal ◽

Implementation Barriers ◽

Secure Messaging ◽

Patient Admissions ◽

Patient Reported

BACKGROUND Poor discharge preparation during hospitalization may lead to adverse events after discharge. Checklists and videos that systematically engage patients in preparing for discharge have the potential to improve safety, especially when integrated into clinician workflow via the electronic health record (EHR). OBJECTIVE This study aims to evaluate the implementation of a suite of digital health tools integrated with the EHR to engage hospitalized patients, caregivers, and their care team in preparing for discharge. METHODS We used the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework to identify pertinent research questions related to implementation. We iteratively refined patient and clinician-facing intervention components using a participatory process involving end users and institutional stakeholders. The intervention was implemented at a large academic medical center from December 2017 to July 2018. Patients who agreed to participate were coached to watch a discharge video, complete a checklist assessing discharge readiness, and request postdischarge text messaging with a physician 24 to 48 hours before their expected discharge date, which was displayed via a patient portal and bedside display. Clinicians could view concerns reported by patients based on their checklist responses in real time via a safety dashboard integrated with the EHR and choose to open a secure messaging thread with the patient for up to 7 days after discharge. We used mixed methods to evaluate our implementation experience. RESULTS Of 752 patient admissions, 510 (67.8%) patients or caregivers participated: 416 (55.3%) watched the video and completed the checklist, and 94 (12.5%) completed the checklist alone. On average, 4.24 concerns were reported per each of the 510 checklist submissions, most commonly about medications (664/2164, 30.7%) and follow-up (656/2164, 30.3%). Of the 510 completed checklists, a member of the care team accessed the safety dashboard to view 210 (41.2%) patient-reported concerns. For 422 patient admissions where postdischarge messaging was available, 141 (33.4%) patients requested this service; of these, a physician initiated secure messaging for 3 (2.1%) discharges. Most patient survey participants perceived that the intervention promoted self-management and communication with their care team. Patient interview participants endorsed gaps in communication with their care team and thought that the video and checklist would be useful closer toward discharge. Clinicians participating in focus groups perceived the value for patients but suggested that low awareness and variable workflow regarding the intervention, lack of technical optimization, and inconsistent clinician leadership limited the use of clinician-facing components. CONCLUSIONS A suite of EHR-integrated digital health tools to engage patients, caregivers, and clinicians in discharge preparation during hospitalization was feasible, acceptable, and valuable; however, important challenges were identified during implementation. We offer strategies to address implementation barriers and promote adoption of these tools. CLINICALTRIAL ClinicalTrials.gov NCT03116074; https://clinicaltrials.gov/ct2/show/NCT03116074.

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Shared Access to Patient Portals and Digital Health Equity (Preprint)

10.2196/preprints.34628 ◽

2021 ◽

Author(s):

Jennifer Wolff ◽

Vadim Dukhanin ◽

Julia Burgdorf ◽

Cait DesRoches

Keyword(s):

Health System ◽

Health Equity ◽

Care Delivery ◽

Digital Health ◽

Patient Portal ◽

Patient Portals ◽

Information Transparency ◽

Care Partners ◽

Challenges And Opportunities ◽

Role Based

UNSTRUCTURED Growing reliance on the patient portal as a mainstream modality in health system interactions necessitates prioritizing digital health equity through systems-level strategies that acknowledge and support all persons. Older adults with physical, cognitive, sensory, and socio-economic vulnerabilities often rely on the involvement of family and friend care partners when navigating health system demands, but their role in health information technology is largely undefined and poorly understood. This perspective discusses challenges and opportunities of systematic engagement of care partners through shared access to the patient portal that have been amplified in the context of the COVID-19 outbreak and recent implementation of federal information blocking rules that promote information transparency. We describe implementation considerations, and the promise of granular, role-based privacy controls in addressing the nuanced and dynamic nature of individual information sharing preferences and fostering person- and family-centered care delivery.

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