PROeverywhere: Bridging the implementation gap of patient-reported outcomes with a mobile app.

2018 ◽  
Vol 36 (30_suppl) ◽  
pp. 203-203
Author(s):  
Kin Wai (Tony) Hung ◽  
Natasha Banerjee ◽  
Jeffrey M. Miller
Keyword(s):  
Cancer Care ◽  
Patient Reported Outcome ◽  
Mobile App ◽  
Patient Centered ◽  
Development Environment ◽  
Implementation Challenges ◽  
Memory Problems ◽  
Longitudinal Tracking ◽  
Patient Reported ◽  
Centered Care

203 Background: Patient reported outcome (PRO) data are critical for informing patient-centered care and have been shown to enhance our ability to communicate with patients, to control their symptoms, and to impact their survival. However, PRO data are not commonly collected in routine cancer care due to implementation challenges such as cost, technological rigidity of existing electronic health records, and misalignment of stakeholders’ incentives. Methods: In an effort to bridge the unmet needs of PRO collection and integration into routine cancer care, we aim to develop an effective, scalable, and sustainable symptom monitoring and management system that can be accessible worldwide. The system was developed using Xcode, the integrative development environment of Apple Inc., with the Swift programing language. Results: On Nov 28th, 2017, we launched a free, mobile PRO application on the Apple App Store – PROeverywhere. PROeverywhere is designed for reporting twelve common symptoms from the National Cancer Institute’s Common Terminology Criteria for Adverse Events. These symptoms include pain, fatigue, nausea/vomiting, appetite loss, diarrhea, constipation, shortness of breath, depression, anxiety, insomnia, memory problems, and neuropathy. Symptoms are reported in a 5-point scale – no symptom, mild, moderate, severe, and disabling. PROeverywhere has the functions to record symptoms, summarize the reporting in printout, and automatically store and analyze the input into graphical interpretations. Updates to PROeverywhere will be released in July 2018, with additional features that include longitudinal tracking dashboard, emoji scale, Spanish questionnaire, and “social networking” capability to connect users with potential to allow remote, real-time, reporting and monitoring. PROeverywhere is downloadable worldwide and securely powered by Google Firebase. Conclusions: PROeverywhere is developed to enable PRO data to be shared more easily and regularly in routine cancer care. Implementation of this free mobile application would allow for consistency in collection of PRO data with the potential to impact patient outcomes globally.

Real-time detection of patient-reported outcomes (PRO) through an app: A Brazilian experience.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e23059-e23059
Author(s):  
Alessandra Menezes Morelle ◽  
Geraldine Eltz de Lima ◽  
Nathalia D'Agustini ◽  
Fernando Castilho Venero ◽  
Carlos H. Barrios
Keyword(s):  
Cancer Care ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Mobile App ◽  
Common Side Effect ◽  
Patient Centered ◽  
Patient Reported ◽  
Centered Care ◽  
Male Patients ◽  
Prompt Attention

e23059 Background: patient-reported outcomes (PRO) data are critical for informing patient-centered care and have been shown to enhance our ability to communicate with patients and to control their symptoms. Evidence suggests that patient active participation in symptom reporting and prompt attention to management may have a positive and measurable impact in survival. However, PRO data are not commonly collected in routine cancer care due to challenges – cost, technological rigidity of existing electronic health records and misalignment of stakeholders’ incentives. Methods: in an effort to bridge the unmet needs of PRO collection and integration into routine cancer care, we developed a symptom monitoring and management system that was launched as a free mobile app in August, 2018. Tummi app is designed for reporting 28 symptoms based on the National Cancer Institute’s Common Terminology Criteria for Adverse Events. Symptoms are reported in a 3-point scale (mild, moderate, severe) and patient reported an overall well-being scale represented by emojis. Tummi has the ability to record symptoms, summarize the reporting in physical printout, and automatically store and analyze the input symptoms into graphical interpretations. Results: since august 2018, 1292 patients downloaded and enjoyed the app. Of these, 240 recorded spontaneously their diagnosis. The most common side effect registered was fatigue followed by back pain. Regarding general well-being reports, male patients (25.68%) and female patients (74.32%) totaled 3771 records. Of these, on 50.22% of the time the patients were well, while in 40.17% they were average and in 9.59% they felt bad when made the report. Conclusions: there is an opportunity to better deliver our care for cancer patients, empowering them through collecting their own data. Tummi proved to be doable and understandable for patients’ language in Brazil.

scholarly journals Design and feasibility of integrating personalized PRO dashboards into prostate cancer care

2015 ◽  
Vol 23 (1) ◽  
pp. 38-47 ◽  
Author(s):  
Andrea L Hartzler ◽  
Jason P Izard ◽  
Bruce L Dalkin ◽  
Sean P Mikles ◽  
John L Gore
Keyword(s):  
Prostate Cancer ◽  
Focus Groups ◽  
Cancer Care ◽  
Line Graphs ◽  
Patient Centered ◽  
Human Centered Design ◽  
Patient Reported ◽  
Related Quality ◽  
Centered Care ◽  
Health Related

Abstract Objective Patient-reported outcomes (PROs) are a valued source of health information, but prior work focuses largely on data capture without guidance on visual displays that promote effective PRO use in patient-centered care. We engaged patients, providers, and design experts in human-centered design of “PRO dashboards” that illustrate trends in health-related quality of life (HRQOL) reported by patients following prostate cancer treatment. Materials and Methods We designed and assessed the feasibility of integrating dashboards into care in 3 steps: (1) capture PRO needs of patients and providers through focus groups and interviews; (2) iteratively build and refine a prototype dashboard; and (3) pilot test dashboards with patients and their provider during follow-up care. Results Focus groups ( n = 60 patients) prioritized needs for dashboards that compared longitudinal trends in patients’ HRQOL with “men like me.” Of the candidate dashboard designs, 50 patients and 50 providers rated pictographs less helpful than bar charts, line graphs, or tables ( P < .001) and preferred bar charts and line graphs most. Given these needs and the design recommendations from our Patient Advisory Board ( n = 7) and design experts ( n = 7), we built and refined a prototype that charts patients’ HRQOL compared with age- and treatment-matched patients in personalized dashboards. Pilot testing dashboard use ( n = 12 patients) improved compliance with quality indicators for prostate cancer care ( P < .01). Conclusion PRO dashboards are a promising approach for integrating patient-generated data into prostate cancer care. Informed by human-centered design principles, this work establishes guidance on dashboard content, tailoring, and clinical use that patients and providers find meaningful.

Patient Reported Outcome Measures in Neurologic Communication Disorders: An Update

2015 ◽  
Vol 25 (3) ◽  
pp. 114-120 ◽  
Author(s):  
Michael de Riesthal ◽  
Katherine B. Ross
Keyword(s):  
Clinical Practice ◽  
Outcomes Research ◽  
Outcome Measurement ◽  
Communication Disorders ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Centered ◽  
Rehabilitation Outcomes ◽  
Patient Reported ◽  
Centered Care

In her seminal book on outcome measurement in the field of communication disorders, Carol Frattali (1998) set the path for outcomes research and clinical application in the field of speech-language pathology. In particular, she defined the many possible outcomes that can be measured to examine the influence of an intervention and the ways in which these measures can inform public policy. Of these, patient or client centered measures, which index outcome based on the patient's and family's or caregiver's perspective, have received increasing attention in recent research and clinical practice. These measures examine a variety of patient reported outcomes (PRO) associated with health. PRO measures are being used more commonly in clinical practice and as end points in medical and rehabilitation outcomes research. This perspective reflects the shift in medicine and rehabilitation toward patient-centered care. In this article, we will examine the rationale for using PRO measures, the advantages and challenges for using these tools, and current use of PRO measures in neurological communication disorders.

scholarly journals Electronic Patient-Reported Outcome–Based Interventions for Palliative Cancer Care: A Systematic and Mapping Review

2020 ◽  
pp. 647-656 ◽  
Author(s):  
Christina Karamanidou ◽  
Pantelis Natsiavas ◽  
Lefteris Koumakis ◽  
Kostas Marias ◽  
Fatima Schera ◽  
...  
Keyword(s):  
Cancer Care ◽  
Digital Health ◽  
Evaluation Study ◽  
Patient Reported Outcome ◽  
Assessment Instruments ◽  
Patient Centered ◽  
Study Protocols ◽  
Patient Reported ◽  
Mapping Review ◽  
Meta Analyses

PURPOSE Capitalizing on the promise of patient-reported outcomes (PROs), electronic implementations of PROs (ePROs) are expected to play an important role in the development of novel digital health interventions targeting palliative cancer care. We performed a systematic and mapping review of the scientific literature on the current ePRO-based approaches used for palliative cancer care. METHODS Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement guidelines, the conducted review answered the research questions: “What are the current ePRO-based approaches for palliative cancer care; what is their contribution/value in the domain of palliative cancer care; and what are the potential gaps, challenges, and opportunities for further research?” After a screening step, the corpus of included articles indexed in PubMed or the Web of Science underwent full text review, which mapped the articles across 15 predefined axes. RESULTS The corpus of 24 mapped studies includes 9 study protocols, 7 technical tools/solutions, 7 pilot/feasibility/acceptability studies, and 1 evaluation study. The review of the corpus revealed (1) an archetype of ePRO-enabled interventions for palliative cancer care, which most commonly use ePROs as study end point assessment instruments rather than integral intervention components; (2) the fact that the literature has not fully embraced the modern definitions that expand the scope of palliative care; (3) the striking shortage of promising ubiquitous computing devices (eg, smart activity trackers); and (4) emerging evidence about the benefits of narrowing down the target cancer population, especially when combined with modern patient-centered intervention design methodologies. CONCLUSION Although research on exploiting ePROs for the development of digital palliative cancer care interventions is considerably active and demonstrates several successful cases, there is considerable room for improvement along the directions of the aforementioned findings.

scholarly journals Patient-reported data and the politics of meaningful data work

2018 ◽  
Vol 25 (3) ◽  
pp. 567-576 ◽  
Author(s):  
Henriette Langstrup
Keyword(s):  
Patient Reported Outcome ◽  
Outcome Data ◽  
Patient Centered ◽  
Danish Patient ◽  
Health Authorities ◽  
Patient Reported ◽  
Active Patient ◽  
Centered Care ◽  
Reported Data ◽  
Meaningful Data

Patient-reported outcome data have moved from the realm of research to center stage in efforts to provide patient-centered care. In a Danish context, health authorities are seeking to promote and standardize the use of patient-reported outcome data. This involves normative articulations of what counts as meaningful data work in a healthcare system characterized by intensified data-sourcing. Based on ethnographic material, I suggest that an assemblage of actors, both human and technological, has accomplished the articulation of meaningful data work, with patient-reported outcome as being dependent on the active application of data in clinical trajectories—in contrast to supplying data “passively” for secondary use for research or governance. This normative articulation of “Active patient-reported outcome” legitimizes the Danish patient-reported outcome assemblage by showing alignment of the concerns of patients, clinicians and health authorities. At the same time, “Active patient-reported outcome” foreshadows challenges in making data work meaningful in local practice.

scholarly journals The GIMEMA-ALLIANCE Digital Health Platform for Patients With Hematologic Malignancies in the COVID-19 Pandemic and Postpandemic Era: Protocol for a Multicenter, Prospective, Observational Study (Preprint)

2020 ◽  
Author(s):  
Fabio Efficace ◽  
Massimo Breccia ◽  
Paola Fazi ◽  
Francesco Cottone ◽  
Bernhard Holzner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Digital Health ◽  
Hematologic Malignancies ◽  
Patient Centered Care ◽  
Patient Reported Outcome ◽  
Routine Practice ◽  
Patient Centered ◽  
Patient Reported ◽  
Centered Care

BACKGROUND The COVID-19 pandemic has raised unprecedented challenges in the management of patients with cancer and has increased the demands for digital health tools that, for example, could facilitate remote monitoring of patients. Based on this, the Gruppo Italiano Malattie Ematologiche dell’Adulto (GIMEMA) has recently developed a digital health tool dedicated to patients with hematologic malignancies: the GIMEMA-ALLIANCE platform. OBJECTIVE The main objectives of this web-based platform are to generate relevant data to better understand quality of life, symptoms, and medication adherence during the COVID-19 pandemic and postpandemic era; to develop a prospective real-life registry on outcomes of patients with hematologic cancer, with or without a diagnosis of COVID-19; and to facilitate patient-centered care in routine practice. METHODS The platform consists of physician- and patient-secure portals and enables electronic patient-reported outcome (ePRO) assessments with real-time graphical presentation to physicians of individual patient symptoms and quality-of-life outcomes. Automated alerts are sent to treating hematologists based on the following predetermined criteria: presence of clinically important problems and symptoms, problems with adherence to therapy, and risk of COVID-19 diagnosis. The platform also allows physicians to set up video consultations. Clinical information regarding disease and treatment as well as clinical and survival outcomes are also prospectively collected. RESULTS Recruitment of participants started in December 2020. As of April 2021, a total of 116 patients have been enrolled in this study. Use of this platform may help to improve patient-physician communication and help hematologists in the early recognition of clinically important problems and symptoms of their patients. More than 20 community and university-based hospitals have currently agreed to participate. In addition to patient-reported outcome data, the prospective collection of disease- and treatment-related information, as well as data on possible COVID-19 diagnosis and COVID-19 vaccination, will allow the development of a large database to also identify subgroups of patients at risk of poor outcomes. CONCLUSIONS Data generated via this platform will help to answer clinically relevant questions for patients with hematologic malignancies during the COVID-19 pandemic and postpandemic era. The use of the GIMEMA-ALLIANCE platform in routine practice may also contribute to enhancing patient-centered care. CLINICALTRIAL ClinicalTrials.gov NCT04581187; https://clinicaltrials.gov/ct2/show/NCT04581187 INTERNATIONAL REGISTERED REPORT PRR1-10.2196/25271

The influence of patient engagement on the design and implementation of a clinical trial to improve cancer care delivery.

2018 ◽  
Vol 36 (30_suppl) ◽  
pp. 223-223
Author(s):  
Sarah Barger ◽  
Sean D Sullivan ◽  
Gary H. Lyman ◽  
Dawn L. Hershman ◽  
Ari Bell-Brown ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Care Delivery ◽  
Patient Reported Outcome ◽  
Study Patient ◽  
Advisory Group ◽  
Patient Centeredness ◽  
Patient Centered ◽  
Implementation Challenges ◽  
Patient Reported ◽  
Study Team

223 Background: We have engaged 10 patient partners in the development and implementation of S1415CD, a five-year pragmatic clinical trial currently in year 3 assessing the effectiveness of a guideline-based colony stimulating factor standing order intervention (NCT02728596). Patient partners serve as part of a 21-person External Stakeholder Advisory Group (ESAG), which also includes providers, payers and guidelines experts. This abstract explores the influence of patient partners on the design, tools and implementation of S1415CD Methods: Patient partners advise the study team on protocol development, patient-facing materials and implementation challenges over four teleconferences each year, annual in-person meetings and targeted email communication. All patient partner input from 2014-2017 was tracked, collected and reviewed for impact on the trial. Results: Input from patient partners led to the refinement of the study’s patient-reported outcome (PRO) survey questions, the creation of a highly utilized patient brochure, and the formation of talking points for clinic staff to help explain the study. Patient partners in conjunction with high performing sites helped develop strategies for sites with lower patient accrual to optimize the approach and consent of study participants. Conclusions: The sustained engagement of patient partners in S1415CD ensured patient-centeredness in trial design and guided the development of PRO surveys and relevant, high quality patient-facing materials. Drawing on experiential knowledge and insights from their roles as caregivers and advocates, patient partners provided valuable feedback that influenced patient approach and engagement in the study. Embedding patient partners in the research continuum has catalyzed critical discussions and problem solving among the patient partners and study team, which has led to patient-centered solutions to study challenges. Clinical trial information: NCT02728596.

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