Patient Portals: Enabling Participatory Medicine

2016 ◽  
pp. 253-272
Keyword(s):  
Patient Portals ◽  
Participatory Medicine

An Overview of Digital Health in the Transition of Pediatric to Adult Epilepsy Care

2020 ◽  
Vol 09 (04) ◽  
pp. 106-113
Author(s):  
Ysabeau Bernard-Willis ◽  
Emily De Oliveira ◽  
Shaheen E Lakhan
Keyword(s):  
Health Management ◽  
Digital Health ◽  
Health Care Systems ◽  
Well Being ◽  
Pediatric Care ◽  
Medical Mistrust ◽  
Patient Portals ◽  
Language Therapy ◽  
Adult Care ◽  
Care Systems

AbstractChildren with epilepsy often have impairments in cognitive and behavioral functioning which may hinder socio-occupational well-being as they reach adulthood. Adolescents with epilepsy have the added worry of health problems while starting the transition from family-centered pediatric care into largely autonomous adult care. If this transition is not appropriately planned and resourced, it may result in medical mistrust, nonadherence, and worsening biopsychosocial health as an adult. In recent years, there has been increased availability of digital health solutions that may be used during this stark change in care and treating teams. The digital health landscape includes a wide variety of technologies meant to address challenges faced by patients, caregivers, medical professionals, and health care systems. These technologies include mobile health products and wearable devices (e.g., seizure monitors and trackers, smartphone passive data collection), digital therapeutics (e.g., cognitive/behavioral health management; digital speech–language therapy), telehealth services (e.g., teleneurology visits), and health information technology (e.g., electronic medical records with patient portals). Such digital health solutions may empower patients in their journey toward optimal brain health during the vulnerable period of pediatric to adult care transition. Further research is needed to validate and measure their impact on clinical outcomes, health economics, and quality of life.

Policy Considerations for the Design and Use of Web Portals for Researchers, Clinicians, and Patients: A Scoping Literature Review (Preprint)

2020 ◽  
Author(s):  
Michael Lang ◽  
Sébastien Lemieux ◽  
Josée Hébert ◽  
Guy Sauvageau ◽  
Ma'n H. Zawati
Keyword(s):  
Patient Care ◽  
Health Research ◽  
Complex Disease ◽  
Patient Empowerment ◽  
Patient Portals ◽  
Research Results ◽  
Online Systems ◽  
The Public ◽  
Online Tools ◽  
Research Findings

BACKGROUND Medical care and health research are jointly undergoing significant changes brought about by the Internet [1,2,3]. New online tools, apps, and programs are helping to facilitate unprecedented levels of data sharing and collaboration, potentially enabling more precisely targeted treatment and rapid research translation [4,5,6]. Patient portals have been a significant part of this emerging online health ecosystem, providing patients a mechanism for accessing electronic health records, managing appointments and prescriptions, even communicating directly with care providers [7]. Much has been written about the technical and ethical challenges associated with the development and integration of patient portals into the clinic [8,9]. But portal technology might also be used to connect health researchers to clinicians, patients, and the public. Online systems could be a useful platform for broadly and rapidly disseminating research results while also promoting patient empowerment. OBJECTIVE The aim of this study is to assess the potential use of online portals that facilitate the sharing of health research findings among researchers, clinicians, patients, and the public. It will also summarize the potential legal, ethical, and policy implications associated with such tools for public use and in the management of patient care for complex disease. METHODS We systematically consulted three databases, PubMed, Scopus, and WestLaw Next for sources describing online portals for sharing health research findings among clinicians, researchers, and patients and their associated legal, ethical, and policy challenges. raised by the integration of online tools into patient care for complex disease. Of 719 source citations, we retained 22 for review. RESULTS We found a varied and inconsistent treatment of online portals for sharing health research findings among clinicians, researchers, and patients. While the literature supports the view that portals of this kind are potentially highly promising, they remain novel and are not yet being widely adopted. We also found a wide-ranging discussion on the legal, ethical, and policy issues related to the use of online tools for sharing research data. We identified five important policy challenges: privacy & confidentiality, health literacy & patient empowerment, equity, training, and decision making. Each of these, we contend, have meaningful implications for the increased integration of online tools into clinical care. CONCLUSIONS As online tools become increasingly important mechanisms for sharing health research with clinicians, patients, and the public, it is vital that these developments are met with ethical and conceptual scrutiny. Therapeutic portals as they are presented in this paper may become a more widespread feature of precision and translational medicine. Our findings suggest that online portals are already being used to disseminate research results among clinicians, patients, and the public. But much of the ethical and conceptual debate is framed in terms of the patient portal, a concept that does not adequately reflect the potentially broader scope of therapeutic portals. It may be useful to clarify this distinction in future research and to underscore the unique ethical, legal, and policy challenges raised when online systems are used as a platform for disseminating research to as wide an audience as possible. CLINICALTRIAL n/a

Family perceptions of the usability and value of chronic disease web-based patient portals

2013 ◽  
Vol 20 (2) ◽  
pp. 151-162 ◽  
Author(s):  
Terri L Byczkowski ◽  
Jennifer K Munafo ◽  
Maria T Britto
Keyword(s):  
Chronic Disease ◽  
Patient Portals ◽  
Web Based ◽  
Family Perceptions

scholarly journals Factors Driving Users’ Engagement in Patient Social Network Systems

Informatics ◽  
2021 ◽  
Vol 8 (1) ◽  
pp. 8
Author(s):  
Ira Puspitasari ◽  
Shukor Sanim Mohd Fauzi ◽  
Cheng-Yuan Ho
Keyword(s):  
Social Network ◽  
Structural Equation ◽  
Clinical Manifestations ◽  
Behavioral Model ◽  
Self Determination Theory ◽  
Equation Modeling ◽  
Medical Professionals ◽  
Network Systems ◽  
Constructive Engagement ◽  
Participatory Medicine

Participatory medicine and e-health help to promote health literacy among non-medical professionals. Users of e-health systems actively participate in a patient social network system (PSNS) to share health information and experiences with other users with similar health conditions. Users’ activities provide valuable healthcare resources to develop effective participatory medicine between patients, caregivers, and medical professionals. This study aims to investigate the factors of patients’ engagement in a PSNS by integrating and modifying an existing behavioral model and information system model (i.e., affective events theory (AET) and self-determination theory (SDT)). The AET is used to model the structure, the affective aspects of the driven behavior, and actual affective manifestation. The SDT is used to model interest and its relations with behavior. The data analysis and model testing are based on structural equation modeling, using responses from 428 users. The results indicate that interest and empathy promote users’ engagement in a PSNS. The findings from this study suggest recommendations to further promote users’ participation in a PSNS from the sociotechnical perspective, which include sensitizing and constructive engagement features. Furthermore, the data generated from a user’s participation in a PSNS could contribute to the study of clinical manifestations of disease, especially an emerging disease.

scholarly journals Policies and procedures governing patient portal use at an Academic Medical Center

JAMIA Open ◽  
2019 ◽  
Vol 2 (4) ◽  
pp. 479-488
Author(s):  
Bryan D Steitz ◽  
Joseph Isaac S Wong ◽  
Jared G Cobb ◽  
Brian Carlson ◽  
Gaye Smith ◽  
...  
Keyword(s):  
Government Regulation ◽  
Medical Center ◽  
Academic Medical Center ◽  
Successful Implementation ◽  
Patient Portal ◽  
Patient Portals ◽  
Identity Verification ◽  
Policies And Procedures ◽  
Academic Medical ◽  
And Function

Abstract Background and Objective Patient portal use has increased over the last two decades in response to consumer demand and government regulation. Despite growing adoption, few guidelines exist to direct successful implementation and governance. We describe the policies and procedures that have governed over a decade of continuous My Health at Vanderbilt (MHAV) patient portal use. Methods We examined MHAV usage data between May 2007 and November 2017. We classified patient portal activity into eight functional categories: Appointment, Billing, Document Access, Genetics, Health Result, Immunization, Medication, and Messaging. We describe our operating policies and measure portal uptake, patient account activity, and function use over time. Results By the end of the study period, there were 375 517 registered accounts. Policies made MHAV available to competent adults and adolescents 13 and over. Patients signed up for a limited access account online, which could be upgraded to a full-access account after identity verification. Patients could assign proxy accounts to family and caregivers, which permitted nonpatient access to select MHAV functions. Laboratory and radiology results were accessible via MHAV. Results were classified into three groups based on sensitivity, which govern the length of delay before results appeared in MHAV. Discussion and Conclusion Patient portals offer significant opportunity to engage patients in their healthcare. However, there remains a need to understand how policies can promote uptake and use. We anticipate that other institutions can apply concepts from our policies to support meaningful patient portal engagement.

scholarly journals Personalized participatory medicine: sharing knowledge and uncertainty

10.1186/gm285 ◽  
2011 ◽  
Vol 3 (10) ◽  
pp. 69 ◽  
Author(s):  
David Gurwitz ◽  
Jeantine E Lunshof
Keyword(s):  
Medicine Sharing ◽  
Participatory Medicine

scholarly journals Internet Usage by Patients with Multiple Sclerosis: Implications to Participatory Medicine and Personalized Healthcare

2010 ◽  
Vol 2010 ◽  
pp. 1-7 ◽  
Author(s):  
Izabella Lejbkowicz ◽  
Tamar Paperna ◽  
Nili Stein ◽  
Sara Dishon ◽  
Ariel Miller
Keyword(s):  
Multiple Sclerosis ◽  
Support Groups ◽  
Disease Duration ◽  
Internet Usage ◽  
Online Health Information ◽  
Online Information ◽  
Improve Symptom ◽  
Disabled Patients ◽  
Healthcare Optimization ◽  
Participatory Medicine

Online health information and services for patients were suggested to improve symptom management and treatment adherence, thereby contributing to healthcare optimization. This paper aimed to characterize multiple sclerosis (MS) patients Internet usage. Information regarding browsing habits, Internet reliability, and the medical team's attitude to information collected online was obtained by questionnaires from MS patients. Data was compared between nonbrowsers, browsers on MS topics, and browsers on non-MS topics only. From the 96 patients recruited, 61 (63.5%) performed MS-related searches. The most viewed topics were “understanding the disease” and “treatments”. Patients reported that the information helped coping with MS and assured them of the appropriateness of their therapy. Shorter disease duration was correlated with higher Internet activity. Disabled patients were more interested in online interaction with specialists and support groups. This paper suggests that MS patients benefit from online information, and it emphasizes the importance of resources tailored to patients needs.

scholarly journals Patient Portal, Patient-Generated Images, and Medical Decision-Making in a Pediatric Ambulatory Setting

2020 ◽  
Vol 11 (05) ◽  
pp. 764-768
Author(s):  
Karolin Ginting ◽  
Adrienne Stolfi ◽  
Jordan Wright ◽  
Abiodun Omoloja
Keyword(s):  
Decision Making ◽  
Health Care Providers ◽  
Medical Decision Making ◽  
Pediatric Population ◽  
Private Insurance ◽  
Medical Decision ◽  
Ambulatory Setting ◽  
Patient Portal ◽  
Care Providers ◽  
Patient Portals

Abstract Background Electronic health record (EHR) patient portals are a secure electronic method of communicating with health care providers. In addition to sending secure messages, images, and videos generated by families can be sent to providers securely. With the widespread use of smart phones, there has been an increase in patient-generated images (PGI) sent to providers via patient portals. There are few studies that have evaluated the role of PGI in medical decision-making. Objectives The study aimed to characterize PGI sent to providers via a patient portal, determine how often PGI-affected medical decision-making, and determine the rate of social PGI sent via patient portal. Methods A retrospective chart review of PGI uploaded to a children's hospital's ambulatory patient portal from January 2011 to December 2017 was conducted. Data collected included patient demographics, number and type of images sent, person sending images (patient or parent/guardian), and whether an image-affected medical decision-making. Images were classified as medical related (e.g., blood glucose readings and skin rashes), nonmedical or administrative related (e.g., medical clearance or insurance forms), and social (e.g., self-portraits and camp pictures). Results One hundred forty-three individuals used the portal a total of 358 times, sending 507 images over the study period. Mean (standard deviation) patient age was 9.5 (5.9) years, 50% were females, 89% were White, and 64% had private insurance. About 9% of images were sent directly by patients and the rest by parents/guardians. A total of 387 (76%) images were sent for medical related reasons, 20% for nonmedical, and 4% were deemed social images. Of the 387 medical related images, 314 (81%) affected medical decision-making. Conclusion PGI-affected medical decision-making in most cases. Additional studies are needed to characterize use of PGI in the pediatric population.

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