scholarly journals Oncology Patients’ Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada (Preprint)

2021 ◽  
Author(s):  
Amanda D Santos ◽  
Vera Caine ◽  
Paula J Robson ◽  
Linda Watson ◽  
Jacob C Easaw ◽  
...  
Keyword(s):  
Health Care ◽  
Family Caregivers ◽  
Clinical Information ◽  
The United States ◽  
Patient Portal ◽  
Health Care Needs ◽  
Care Providers ◽  
Patient Portals ◽  
Care Needs ◽  
Oncology Patients

BACKGROUND With the current proliferation of clinical information technologies internationally, patient portals are increasingly being adopted in health care. Research, conducted mostly in the United States, shows that oncology patients have a keen interest in portals to gain access to and track comprehensive personal health information. In Canada, patient portals are relatively new and research into their use and effects is currently emerging. There is a need to understand oncology patients’ experiences of using eHealth tools and to ground these experiences in local sociopolitical contexts of technology implementation, while seeking to devise strategies to enhance portal benefits. OBJECTIVE The purpose of this study was to explore the experiences of oncology patients and their family caregivers when using electronic patient portals to support their health care needs. We focused on how Alberta’s unique, 2-portal context shapes experiences of early portal adopters and nonadopters, in anticipation of a province-wide rollout of a clinical information system in oncology facilities. METHODS This qualitative descriptive study employed individual semistructured interviews and demographic surveys with 11 participants. Interviews were audio-recorded and transcribed verbatim. Data were analyzed thematically. The study was approved by the University of Alberta Human Research Ethics Board. RESULTS Participants currently living with nonactive cancer discussed an online patient portal as one among many tools (including the internet, phone, videoconferencing, print-out reports) available to make sense of their diagnosis and treatment, maintain connections with health care providers, and engage with information. In the Fall of 2020, most participants had access to 1 of 2 of Alberta’s patient portals and identified ways in which this portal was supportive (or not) of their ongoing health care needs. Four major themes, reflecting the participants’ broader concerns within which the portal use was occurring, were generated from the data: (1) experiencing doubt and the desire for transparency; (2) seeking to become an informed and active member of the health care team; (3) encountering complexity; and (4) emphasizing the importance of the patient–provider relationship. CONCLUSIONS Although people diagnosed with cancer and their family caregivers considered an online patient portal as beneficial, they identified several areas that limit how portals support their oncology care. Providers of health care portals are invited to recognize these limitations and work toward addressing them.

Social media and peer-to-peer support for individuals with health care needs and their caregivers: a scoping review (Preprint)

2019 ◽  
Author(s):  
Katherine Kelly ◽  
Shelley Doucet ◽  
Alison Luke ◽  
Rima Azar ◽  
William Montelpare
Keyword(s):  
Health Care ◽  
Social Media ◽  
Peer Support ◽  
Scoping Review ◽  
Emotional Support ◽  
Peer To Peer ◽  
Health Care Needs ◽  
Care Providers ◽  
Care Needs ◽  
The Many

BACKGROUND Individuals with health care needs and their caregivers require substantial informational and emotional support. Providing this support is a major challenge for care providers, who are often not able to adequately address barriers and may not be aware of available services and programs. Online P2P support offers an accessible and inexpensive source of support; however, the breadth of these supports on social media has not been previously documented. OBJECTIVE This study was a scoping review of research examining the use of peer-to-peer support on social media by individuals with health care needs and their caregivers. METHODS This review used the PRISMA-SR method to search for articles from 1997 to 2019. RESULTS A total of 94 articles were included. Patients and caregivers use many social media websites for P2P interaction, including: Facebook (n = 19), Twitter (n = 7), and YouTube (n = 6). Providing and receiving informational and emotional support were important uses of social media for P2P support; however, the specific needs and experiences of patients and caregivers appeared to change as knowledge regarding the condition(s) improved. Despite the many benefits associated with participating in online P2P groups, concerns related to ethics, privacy, and the potential to spread misinformation are outlined as risks associated with its use. CONCLUSIONS This study revealed that patients and caregivers engage in P2P support on social media to receive informational and emotional support from peers, despite known risks and limitations. Social networking websites were revealed to be particularly suited for P2P support communication.

scholarly journals Health Care Today: Whom Do We Really Care About

2020 ◽  
pp. 002436392095166
Author(s):  
Brother Ignatius Perkins
Keyword(s):  
Health Care ◽  
Common Good ◽  
Human Person ◽  
The United States ◽  
American People ◽  
Health Care Needs ◽  
Care Needs ◽  
Moral Issues ◽  
The Common ◽  
The Continuum

Health services in the United States, driven by moral relativism, technology, financial algorithms, present draconian threats to the ability of these services to respond to the health care needs of the American people. Critical moral issues must be addressed, resolved, and serve as the foundation for a renewed health care system that fulfills the call for the common good and provides services in response to the question “who do we really care about.” Millions of our brothers and sisters continue to join the ranks of the uninsured and unemployed. What is urgently needed is a fair, equitable, accessible, affordable, and, most importantly, an ethical system of health care where the dignity and freedom of the human person, across the continuum of life from conception to natural death, is once again recognized as the summit of the work before us.

scholarly journals Viewpoint: Health literacy and patient portals

2015 ◽  
Vol 7 (2) ◽  
pp. 172 ◽  
Author(s):  
Yulong Gu ◽  
Martin Orr ◽  
Jim Warren
Keyword(s):  
Health Care ◽  
Health Literacy ◽  
Health Information ◽  
Health Care Providers ◽  
Easy Access ◽  
Patient Portal ◽  
Care Providers ◽  
Patient Portals ◽  
Health Consumer ◽  
Improve Patient

Health literacy has been described as the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Improving health literacy may serve to promote concordance with therapy, engage patients in their own health care, and improve health outcomes. Patient portal technology aims at enabling patients and families to have easy access to key information in their own medical records and to communicate with their health care providers electronically. However, there is a gap in our understanding of how portals will improve patient outcome. The authors believe patient portal technology presents an opportunity to improve patient concordance with prescribed therapy, if adequate support is provided to equip patients (and family/carers) with the knowledge needed to utilise the health information available via the portals. Research is needed to understand what a health consumer will use patient portals for and how to support a user to realise the technology?s potential.

scholarly journals Disparities in Shared Decision Making and Service Receipt Among Children With Special Health Care Needs and Developmental Delay: A National Survey Analysis

2020 ◽  
Vol 11 ◽  
pp. 215013272092458
Author(s):  
Monica Perez Jolles ◽  
Leah L. Zullig ◽  
Pey-Jiuan Lee ◽  
Gauri Kolhatkar
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Service Use ◽  
Special Health Care Needs ◽  
Shared Decision ◽  
Health Care Needs ◽  
Care Providers ◽  
Care Needs ◽  
Special Health Care ◽  
Special Health

Shared decision making (SDM) is associated with increased service satisfaction among pediatric patients. Our objective was to examine the association between SDM and service use experiences across racial/ethnic child groups. This secondary data analysis used the 2009-2010 National Survey of Children with Special Health Care Needs (CSHCN) and 2011 Pathways to Diagnosis and Services Survey. We used a rank-and-replace matching approach consistent with Institute of Medicine recommendations for health disparities research. We included CSHCN aged 6 to 17 years. The exposure of interest was parents of CSHCN reporting engagement in SDM with clinicians. There were 4032 CSHCN included in analysis. CSHCNs experiencing SDM had a 16% higher probability of reporting service use compared to those not experiencing it (95% CI, 14.24-19.42). Black children experiencing SDM reported seeing all needed care providers at a lower rate than whites (79% and 87.6% respectively; 95% CI, -14.05-3.27). The benefit of SDM over not experiencing it for blacks was 12.2% less than for whites for the outcome of seeing all needed care providers. For the outcome of receiving all needed treatments and services, the SDM benefit was 9.1% lower for Hispanics compared with whites. SDM can improve service experiences but implementation flexibility may be needed.

scholarly journals Optimization of Primary Care Among Black Americans Using Patient Portals: A Qualitative Study (Preprint)

2021 ◽  
Author(s):  
Omar H Ordaz ◽  
Raina L Croff ◽  
LaTroy D Robinson ◽  
Steven A Shea ◽  
Nicole P Bowles
Keyword(s):  
Primary Care ◽  
Health Care ◽  
Focus Groups ◽  
Thematic Analysis ◽  
Black Americans ◽  
The United States ◽  
Black American ◽  
Patient Portal ◽  
Treatment Team ◽  
Patient Portals

BACKGROUND The existence of lower patient portal use among Black Americans is concerning as portals have been shown to improve the control of chronic conditions that are more prevalent and deadlier in Black Americans than the rest of the population. Portal websites at their very simplest connect patients to their electronic health records and often provide tools for patients to interact with their own health information, treatment team members, and insurance companies. However, research suggests that Black American patients have greater concerns over lack of support, loss of privacy, and reduced personalization of care relative to others in the population, which results in a disparity of portal use. OBJECTIVE This qualitative investigation of primary care experiences of Black Americans from across the United States, who participated in remote focus groups in April and May 2020, explores the use and perceived value of patient portal websites to better understand any barriers to optimized treatment in the primary care setting. METHODS To qualitatively assess the experiences of Black American patients with regular access to portal websites, we performed inductive thematic analysis of eight remote focus group interviews with Black American patients aged 30-60. RESULTS Thematic analysis uncovered the following interrelated themes regarding patient portals in primary care: 1) optimization of care; 2) patient empowerment; 3) patient-provider communication; and 4) patient burden. CONCLUSIONS In contrast to what has been described regarding reluctance of Black Americans to engage with patient portals, our focus groups revealed general acceptance of patient portals, which were described overwhelmingly as tools with potential for exceptional, personalized care that may even work to mitigate the unfair burden of disease for Black Americans in primary care settings. Thus, opportunities for better health care clearly exist with increased communication, experience and adoption of remote health care practices among Black Americans.

scholarly journals A Medical Translation Assistant for Non–English-Speaking Caregivers of Children With Special Health Care Needs: Proposal for a Scalable and Interoperable Mobile App

10.2196/21038 ◽  
2020 ◽  
Vol 9 (10) ◽  
pp. e21038
Author(s):  
Emre Sezgin ◽  
Garey Noritz ◽  
Jeffrey Hoffman ◽  
Yungui Huang
Keyword(s):  
Health Care ◽  
Mobile App ◽  
Special Health Care Needs ◽  
Patient Portal ◽  
Health Care Needs ◽  
Care Needs ◽  
Special Health Care ◽  
Medical Translation ◽  
English Speaking ◽  
Special Health

Background Communication and comprehension of medical information are known barriers in health communication and equity, especially for non–English-speaking caregivers of children with special health care needs. Objective The objective of this proposal was to develop an interoperable and scalable medical translation app for non–English-speaking caregivers to facilitate the conversation between provider and caregiver/patient. Methods We employed user-centered and participatory design methods to understand the problems and develop a solution by engaging the stakeholder team (including caregivers, physicians, researchers, clinical informaticists, nurses, developers, nutritionists, pharmacists, and interpreters) and non–English-speaking caregiver participants. Results Considering the lack of interpreter service accessibility and advancement in translation technology, our team will develop and test an integrated, multimodal (voice-interactive and text-based) patient portal communication and translation app to enable non–English-speaking caregivers to communicate with providers using their preferred languages. For this initial prototype, we will focus on the Spanish language and Spanish-speaking families to test technical feasibility and evaluate usability. Conclusions Our proposal brings a unique perspective to medical translation and communication between caregiver and provider by (1) enabling voice entry and transcription in health care communications, (2) integrating with patient portals to facilitate caregiver and provider communications, and (3) adopting a translation verification model to improve accuracy of artificial intelligence–facilitated translations. Expected outcomes include improved health communications, literacy, and health equity. In addition, data points will be collected to improve autotranslation services in medical communications. We believe our proposed solution is affordable, interoperable, and scalable for health systems.

scholarly journals Improving Behavioral Health Equity through Cultural Competence Training of Health Care Providers

2019 ◽  
Vol 29 (Supp2) ◽  
pp. 359-364 ◽  
Author(s):  
Brian McGregor ◽  
Allyson Belton ◽  
Tracey L. Henry ◽  
Glenda Wrenn ◽  
Kisha B. Holden
Keyword(s):  
Health Care ◽  
Cultural Competence ◽  
Integrated Care ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
Care Delivery ◽  
Ethnic Disparities ◽  
The United States ◽  
Care Providers ◽  
Care Needs

 Racial/ethnic disparities have long persisted in the United States despite concerted health system efforts to improve access and quality of care among African Americans and Latinos. Cultural competence in the health care setting has been recognized as an important feature of high-quality health care delivery for decades and will continue to be paramount as the society in which we live becomes increasingly culturally diverse. Unfortunately, there is limited empirical evidence of patient health benefits of a culturally competent health care workforce in integrated care, its feasibility of imple­mentation, and sustainability strategies. This article reviews the status of cultural competence education in health care, the merits of continued commitment to training health care providers in integrated care settings, and policy and practice strategies to ensure emerging health care professionals and those already in the field are prepared to meet the health care needs of racially and ethnically diverse populations. Ethn Dis. 2019;29(Supp 2):359-364. doi:10.18865/ed.29.S2.359

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