Equitable Research PRAXIS: A Framework for Health Informatics Methods

Veinot, Tiffany C.; Clarke, Phillipa J; Buis, Lorraine R; Dillahunt, Tawanna R.; Beals, Ashley; Brown, Lindsay K.; Richards, Olivia K.; Williamson, Alicia; Antonio, Marcy

doi:10.1055/s-0042-1742542

Cited by 10 publications

(6 citation statements)

References 81 publications

(93 reference statements)

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“… 79–88 Our use of the transformative approach prioritizes patient knowledge about access to resources for improving quality of life, reducing stigma, and promoting social inclusion. 79–83 , 85 Transformative mixed method studies share participatory methods with community-based participatory research, 89–91 and often begin with a qualitative stage to incorporate participants’ perspectives into the research design, with the aim of elevating participants’ knowledge to challenge an inequitable status quo. 83 , 85 …”

Section: Methodsmentioning

confidence: 99%

From illness management to quality of life: rethinking consumer health informatics opportunities for progressive, potentially fatal illnesses

Antonio,

Veinot

2023

Journal of the American Medical Informatics Association

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Objectives Investigate how people with chronic obstructive pulmonary disease (COPD)—an example of a progressive, potentially fatal illness—are using digital technologies (DTs) to address illness experiences, outcomes and social connectedness. Materials and Methods A transformative mixed methods study was conducted in Canada with people with COPD (n = 77) or with a progressive lung condition (n = 6). Stage-1 interviews (n = 7) informed the stage-2 survey. Survey responses (n = 80) facilitated the identification of participants for stage-3 interviews (n = 13). The interviews were thematically analyzed. Descriptive statistics were calculated for the survey. The integrative mixed method analysis involved mixing between and across the stages. Results Most COPD participants (87.0%) used DTs. However, few participants frequently used DTs to self-manage COPD. People used DTs to seek online information about COPD symptoms and treatments, but lacked tailored information about illness progression. Few expressed interest in using DTs for self- monitoring and tracking. The regular use of DTs for intergenerational connections may facilitate leaving a legacy and passing on traditions and memories. Use of DTs for leisure activities provided opportunities for connecting socially and for respite, reminiscing, distraction and spontaneity. Discussion and Conclusion We advocate reconceptualizing consumer health technologies to prioritize quality of life for people with a progressive, potentially fatal illness. “Quality of life informatics” should focus on reducing stigma regarding illness and disability and taboo towards death, improving access to palliative care resources and encouraging experiences to support social, emotional and mental health. For DTs to support people with fatal, progressive illnesses, we must expand informatics strategies to quality of life.

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Section: Methodsmentioning

confidence: 99%

From illness management to quality of life: rethinking consumer health informatics opportunities for progressive, potentially fatal illnesses

Antonio,

Veinot

2023

Journal of the American Medical Informatics Association

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“…To further assess the result of our findings, we performed a similar search for the year of 2022 to discern if more recent literature would add to the significance for this study. We identified at least 21 papers that met our inclusion criteria, including results from the 2022 IMIA Yearbook [64,68,78]. Reading through these articles, we did not identify additional thematic areas than those we have included for the year of 2021.…”

Section: The Way Forwardmentioning

confidence: 99%

Health Equity in Clinical Research Informatics

Maurud¹,

Henni²,

Moen³

2023

Yearb Med Inform

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Objectives: Through a scoping review, we examine in this survey what ways health equity has been promoted in clinical research informatics with patient implications and especially published in the year of 2021 (and some in 2022). Method: A scoping review was conducted guided by using methods described in the Joanna Briggs Institute Manual. The review process consisted of five stages: 1) development of aim and research question, 2) literature search, 3) literature screening and selection, 4) data extraction, and 5) accumulate and report results. Results: From the 478 identified papers in 2021 on the topic of clinical research informatics with focus on health equity as a patient implication, 8 papers met our inclusion criteria. All included papers focused on artificial intelligence (AI) technology. The papers addressed health equity in clinical research informatics either through the exposure of inequity in AI-based solutions or using AI as a tool for promoting health equity in the delivery of healthcare services. While algorithmic bias poses a risk to health equity within AI-based solutions, AI has also uncovered inequity in traditional treatment and demonstrated effective complements and alternatives that promotes health equity. Conclusions: Clinical research informatics with implications for patients still face challenges of ethical nature and clinical value. However, used prudently—for the right purpose in the right context—clinical research informatics could bring powerful tools in advancing health equity in patient care.

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“…The Research paper by Tiffany Veinot et al [10] also a co-author of a best paper selected in the Consumer Health Informatics section [11], concentrates on nine health informatics studies with a focus on equity in the U.S. and Canada (disparities related to age, disability or chronic illness, gender/ sex, place of residence, race/ethnicity, sexual orientation, and socioeconomic status) from which they derive a framework of four considerations for advancing health equity in informatics: PRAXIS (Participation, Representation, Appropriate methods and interventions, conteXtualization and structural competence, and Investigation of Systematic differences).…”

Section: Highlights Of the 31 St Edition Of The Imia Yearbookmentioning

confidence: 99%

Inclusive Digital Health

2022

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Objectives: To introduce the 2022 International Medical Informatics Association (IMIA) Yearbook by the editors. Methods: The editorial provides an introduction and overview to the 2022 IMIA Yearbook whose special topic is “Inclusive Digital Health: Addressing Equity, Literacy, and Bias for Resilient Health Systems”. The special topic, survey papers, section editor synopses and some best papers are discussed. The sections’ changes in the Yearbook Editorial Committee are also described. Results: As shown in the previous edition, health informatics in the context of a global pandemic has led to the development of ways to collect, standardize, disseminate and reuse data worldwide. The Corona Virus Disease 2019 (COVID-19) pandemic has demonstrated the need for timely, reliable, open, and globally available information to support decision making. It has also highlighted the need to address social inequities and disparities in access to care across communities. This edition of the Yearbook acknowledges the fact that much work has been done to study health equity in recent years in the various fields of health informatics research. Conclusion: There is a strong desire to better consider disparities between populations to avoid biases being induced in Artificial Intelligence algorithms in particular. Telemedicine and m-health must be more inclusive for people with disabilities or living in isolated geographical areas.

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Equitable Research PRAXIS: A Framework for Health Informatics Methods

Cited by 10 publications

References 81 publications

From illness management to quality of life: rethinking consumer health informatics opportunities for progressive, potentially fatal illnesses

From illness management to quality of life: rethinking consumer health informatics opportunities for progressive, potentially fatal illnesses

Health Equity in Clinical Research Informatics

Inclusive Digital Health

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