scholarly journals How do the design features of health hackathons contribute to participatory medicine?

2017 ◽  
Vol 21 ◽  
Author(s):  
Karen Day ◽  
Gayl Humphrey ◽  
Sophie Cockcroft
Keyword(s):  
Data Storage ◽  
Success Factors ◽  
Healthcare Providers ◽  
Self Care ◽  
Personal Data ◽  
Participatory Development ◽  
Multiple Sources ◽  
Professional Perspective ◽  
Design Skills ◽  
Participatory Medicine

The Hackathon concept is attracting interest as a vehicle for participatory development in both Health and Information systems. Publically available datasets, cloud based data storage, and increasingly sophisticated analytical methods, combined with user friendly development tools for mobile devices are inspiring innovation in the participatory medicine space. This has the potential to disrupt traditional methods and deliver solutions more rapidly, and in a form more likely to meet requirements. In health applications this involves putting the patient and their supports at the centre of design. This work contributes to solving the challenges involved in bringing a diverse cohort of designers, developers, problem owners, healthcare providers, patients, and citizens together to solve user-driven self-care problems using technology. We use a descriptive case study approach focussing on two weekend-long hackathons dubbed “Health Hackathon: Solving Self-care”. We gather thick data from multiple sources according to the process defined by Geertz (1994) first, to provide a rich picture of the role of hackathons in participatory medicine and second, to contribute evidence to the practise of running a hackathon. Some key originalities of our work include seeking more candid responses via self-serve interviews. Through this, controversially, we noted a marked emphasis on the creative process over concerns for privacy and ethics around the personal data cloud created by hackathon products. We build on existing theories of participatory medicine and emerging methodologies for conducting hackathons to provide evidence of the efficacy of the hacking approach both in terms of outcome and team dynamics. Through interviews, observation, twitter feeds and a pre-survey, we identify a number of success factors including (1) group size, (2) maturity of the idea, (3) level of involvement of a mentor, and (4) involvement of students. In addition we identify five skills identified by successful health hackathon participants; knowledge, patient focussed skills, analytical skills, software design skills and professional perspective. In common with previous studies we find that there are considerable social benefits that accrue in running a hackathon. Participants meet new people and learn first-hand of the challenges and opportunities provided by the skill sets and work environments of others. This work builds on the existing body of research concerning hackathons and in particular work in the context of participatory medicine

scholarly journals Sources and types of information on self-care symptom management strategies for HIV and AIDS

Curationis ◽  
2014 ◽  
Vol 37 (1) ◽  
Author(s):  
Regis R. Marie Modeste ◽  
Sisana J. Majeke
Keyword(s):  
Symptom Management ◽  
Management Strategies ◽  
Healthcare Providers ◽  
Self Care ◽  
Hiv And Aids ◽  
People Living With Hiv ◽  
Sources Of Information ◽  
Multiple Sources ◽  
Types Of Information ◽  
Living With Hiv

Background: It has been reported that South Africa has the highest number of people living with HIV worldwide, with more women being infected than men. Women living with HIV have been documented as experiencing various symptoms related to HIV and use various strategies to manage these symptoms.Objective: The objective of this study was to explore the sources and types of information regarding self-care symptom management strategies received by women living with HIV.Method: The study was conducted at an HIV clinic in an urban area of KwaZulu-Natal. Individual in-depth interviews were completed with 11 women who were living with HIV,exploring the sources of information received on how they manage the HIV- (and/or AIDS-) related symptoms they experienced as well as the types of information received. The collecteddata were analysed using qualitative content analysis.Results: The participants identified various sources, which mainly included groups of people who provided them with information on how to manage their HIV-related symptoms, namely healthcare providers, their personal networks and the community. The different sources offered different types of information, including the use of medication, complementary treatments and self-comforting activities.Conclusion: The study highlights that participants used multiple sources to get information about how to manage the experienced symptoms related to HIV, namely, healthcare providers, family and friends as well as themselves. It is to be noted that each source provided a preferred type of information.

scholarly journals Engineering Solutions to COVID-19 and Racial and Ethnic Health Disparities

2021 ◽  
Author(s):  
Gilda A. Barabino
Keyword(s):  
Health Disparities ◽  
Black Community ◽  
Systems Approach ◽  
Healthcare Providers ◽  
Structural Racism ◽  
Communities Of Color ◽  
Collective Response ◽  
Design Skills

AbstractThe role of engineers in response to the COVID-19 pandemic and in the elimination of health disparities, while not always visible, has important implications for the attainment of impactful solutions. The design skills, systems approach, and innovative mindset that engineers bring all have the potential to combat crises in novel and impactful ways. When a disparities lens is applied, a lens that views gaps in access, resources, and care, the engineering solutions are bound to be more robust and equitable. The disproportionate impact of COVID-19 on the Black community and other communities of color is linked to inequities in health rooted in a centuries long structural racism. Engineers working collaboratively with physicians and healthcare providers are poised to close equity gaps and strengthen the collective response to COVID-19 and future pandemics.

Abstract 247: Pilot Study Examining Heart Failure Patient Internet Use and Adherence to a Web Based Portal Designed to Support Self-Care.

2013 ◽  
Vol 6 (suppl_1) ◽  
Author(s):  
Redah Z Mahmood ◽  
Judith Grossi ◽  
Todd M Koelling
Keyword(s):  
Computer Use ◽  
Healthcare Providers ◽  
Intervention Group ◽  
Self Care ◽  
Web Based ◽  
Face To Face ◽  
Clinical Events ◽  
Home Based ◽  
Care Information ◽  
Use Of Internet

Background: Experts agree that HF patients should practice appropriate self-care behaviors to minimize the risk of adverse clinical events, including early unplanned readmissions. We sought to understand patient perceptions and adherence to a web-based system designed to support self-care of HF patients. Methods: 100 HF patients were surveyed regarding their computer use and attitudes toward using an internet based web-portal (WP) to support self-care, provide patient education, and communicate with healthcare providers (HCP’s). We then consented 42 patients to participate in a 12 week trial of using the WP to track clinical parameters (daily weights, blood pressure, sodium/fluid intake, exercise), provide links for HF self-education, and update HCP’s on their progress. Patients received a face to face teaching session on accessing and using the WP. Results: The computer use survey (N=100) demonstrated that 72% of patients reported having a computer at home, 67% used email and 71% used the internet. In the WP intervention group (N=41) only 24 (58.5%) were able to successfully access the WP and enter data during the pilot (see table 1). Conclusions: Pilot data showed a significant positive correlation (see table 1) between patients indicating use of internet to access heaIth care information (HCI) and adherence with the WP. Despite strong interest to use a home based WP for self-care and communication with providers, we found that many hurdles prevented patients from using the WP. Internet based educational tools for HF patients may be desirable, but limitations in patients’ ability to access internet based programs may ultimately render the tools ineffective.

GDPR and the immigration exemption: what healthcare providers need to know

2021 ◽  
Vol 27 (5) ◽  
pp. 132-134
Author(s):  
Elizabeth Kilburn
Keyword(s):  
Data Protection ◽  
Healthcare Providers ◽  
Personal Data

The immigration exemption to the Data Protection Act means that government bodies can access patients' personal data through healthcare providers. Elizabeth Kilburn discusses this issue in the context of data protection responsibilities in healthcare and the potential consequences of this exemption for patients.

Caring for the Family Caregiver

2020 ◽  
pp. 200-214
Author(s):  
Elaine Wittenberg ◽  
Joy V. Goldsmith ◽  
Sandra L. Ragan ◽  
Terri Ann Parnell
Keyword(s):  
Health Literacy ◽  
Family Caregiver ◽  
Contextual Factors ◽  
Healthcare Providers ◽  
Self Care ◽  
Future Research ◽  
Disease Information ◽  
The Family ◽  
Caregiver Needs ◽  
Literacy Framework

There is little evidence for caregiver assessment and interventions based on unique social and contextual factors of caregiving. Current approaches to caring for the family caregiver involve a “one size fits all” approach where caregiver assessment may or may not occur, and there is no link between identification of caregiver needs and recommended resources. When caregiver assessment does occur, it does not involve unique caregiving characteristics that positively impact communication and health literacy. Caring for the Family Caregiver, a communication and health literacy framework, is introduced and consists of teaching healthcare providers to address caregiving types by finding disease information, assessing and integrating information, partnering with the caregiver, finding support, talking with the caregiver, and planning for caregiver self-care. Directions for future research are also summarized.

Fatigue

2019 ◽  
pp. 132-139
Author(s):  
Edith O’Neil-Page ◽  
Grace E. Dean ◽  
Paula R. Anderson
Keyword(s):  
End Of Life ◽  
Side Effect ◽  
Healthcare Providers ◽  
Self Care ◽  
Significant Others ◽  
Daily Activities ◽  
Course Of Disease ◽  
Cancer Related Fatigue ◽  
Care Requirements ◽  
The Impact

Individuals suffering from chronic or malignant disease may experience overwhelming and debilitating symptoms of extensive tiredness or sleepiness or an inability to meet daily self-care requirements and maintain personal interaction with significant others. However, they may be unable to verbalize the impact of fatigue on their daily activities. Fatigue is both personal and communal, affecting all aspects of life. Fatigue is often unrecognized by family and healthcare providers or is accepted as a “side effect” of disease and treatment. Cancer-related fatigue affects all aspects of life, at all ages, and may remain unacknowledged by healthcare providers. Yet with recognition and intervention, fatigue can be successfully managed throughout the course of disease, recovery, or through end of life.

scholarly journals Perceptions of Strategies and Intervention Approaches for HIV Self-Management among Ugandan Adolescents: A Qualitative Study

2019 ◽  
Vol 18 ◽  
pp. 232595821882324 ◽  
Author(s):  
Massy Mutumba ◽  
Henry Mugerwa ◽  
Victor Musiime ◽  
Anudeeta Gautam ◽  
Hellen Nakyambadde ◽  
...  
Keyword(s):  
Healthcare Providers ◽  
Self Care ◽  
Hiv Care ◽  
Self Management ◽  
Care Needs ◽  
Behavioral Skills ◽  
Social Challenges ◽  
Management Intervention ◽  
Care Outcomes ◽  
Living With Hiv

The heightened vulnerability of adolescents to poor HIV care outcomes underscores the need for interventions that create and promote HIV self-management behavioral skills. Adolescents living with HIV (ALHIV) experience a complex array of physical, emotional, and social challenges that constrain their self-care, but the majority of existing psychosocial programs focus primarily on medication adherence. Understanding adolescents’ self-care needs, challenges, and preferences is necessary for developing effective culturally relevant interventions. The involvement of caregivers and stakeholders is also critical to realizing positive self-care outcomes. This article presents the findings from focus group discussions with ALHIV, caregivers, and healthcare providers on self-care. The data were collected as part of formative research in the development of a self-management intervention for Ugandan ALHIV. Participants’ discussions on self-care strategies and intervention approaches provide valuable insights to guide the development of interventions to promote positive HIV care outcomes among Ugandan ALHIV.

Coping Strategies of School-Age Children With Diabetes Mellitus

1996 ◽  
Vol 22 (6) ◽  
pp. 592-597 ◽  
Author(s):  
Elizabeth A. Boland ◽  
Margaret Grey
Keyword(s):  
Diabetes Mellitus ◽  
Coping Strategies ◽  
Metabolic Control ◽  
Healthcare Providers ◽  
Cognitive Strategies ◽  
Self Care ◽  
Insulin Dependent Diabetes Mellitus ◽  
School Age Children ◽  
Dependent Diabetes Mellitus ◽  
School Age

School-age children (N=43) with insulin-dependent diabetes mellitus were studied to determine if the coping strategies they used were associated with their Self -care management and/or with their metabolic control. Instruments used included the Schoolagers Coping Strategy Inventory and the Self-Care Questionnaire. Results indicated that the choice qf (-ol)iiig strategies did not differ by demographic characteristics, and level of self-care was not associated with metabolic control. Participants used cognitive coping strategies most often; higher frequencies tended to be associated with highter levels of self-care and metabolic control. Those who utilized distracting strategies also tended to have higher levels of self-care. Emotional coping strategies tended to be related to poorer metabolic control. The use of coping strategies explained approximately 18% of the variance in metabolic control. These data suggest that healthcare providers should assess what coping strategies are employed by school-age children with diabetes because the choice of strategies may have a significant impact on their metabolic Control. The use of strategies related to poorer metabolic control (eg, emotional strategies) should be discouraged, and the use of more effective strategies related to higher levels of self-care and metabolic control (eg, cognitive strategies) should be modeled and encouraged.

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