Health information management in the home: A human factors assessment

Zayas‐Cabán, Teresa

doi:10.3233/wor-2012-1306

Cited by 18 publications

(16 citation statements)

References 7 publications

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“…Our work contributes to a growing body of research in personal health information management and personal health information tracking—research that has already identified a range of tasks frequently performed by patients, ranging from tracking health data to managing medical records to creating personal reminder systems [ 27 - 29 , 31 , 32 ]. However, much of the previous work in this field has focused on generally healthy individuals and families [ 27 , 28 , 31 , 32 ], on patients with cancer [ 33 - 36 ], or (in support of HIT design) on computer-literate participants [ 31 ].…”

Section: Discussionmentioning

confidence: 99%

“…Our findings support previous work in the field of technology development for elderly patients or others who do not use electronic technologies regularly. The people we spoke with conducted personal health information management and tracking with a variety of paper and electronic tools, both custom-made and adapted, as has been found by other researchers [ 27 , 29 , 31 ]. As others have found, we found that older patients and those with Medicaid were frequently unfamiliar with electronic technologies.…”

Section: Discussionmentioning

confidence: 99%

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“You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions

Ancker¹,

Witteman²,

Hafeez³

et al. 2015

J Med Internet Res

229

200

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BackgroundConsumer health information technologies (HIT) that encourage self-tracking, such as diet and fitness tracking apps and disease journals, are attracting widespread interest among technology-oriented consumers (such as “quantified self” advocates), entrepreneurs, and the health care industry. Such electronic technologies could potentially benefit the growing population of patients with multiple chronic conditions (MCC). However, MCC is predominantly a condition of the elderly and disproportionately affects the less affluent, so it also seems possible that the barriers to use of consumer HIT would be particularly severe for this patient population.ObjectiveOur aim was to explore the perspectives of individuals with MCC using a semistructured interview study. Our research questions were (1) How do individuals with MCC track their own health and medical data? and (2) How do patients and providers perceive and use patient-tracked data?MethodsWe used semistructured interviews with patients with multiple chronic diseases and providers with experience caring for such patients, as well as participation in a diabetes education group to triangulate emerging themes. Data were analyzed using grounded theory and thematic analysis. Recruitment and analysis took place iteratively until thematic saturation was reached.ResultsInterviews were conducted with 22 patients and 7 health care providers. The patients had an average of 3.5 chronic conditions, including type 2 diabetes, heart disease, chronic pain, and depression, and had regular relationships with an average of 5 providers. Four major themes arose from the interviews: (1) tracking this data feels like work for many patients, (2) personal medical data for individuals with chronic conditions are not simply objective facts, but instead provoke strong positive and negative emotions, value judgments, and diverse interpretations, (3) patients track for different purposes, ranging from sense-making to self-management to reporting to the doctor, and (4) patients often notice that physicians trust technologically measured data such as lab reports over patients’ self-tracked data.ConclusionsDevelopers of consumer health information technologies for data tracking (such as diet and exercise apps or blood glucose logs) often assume patients have unlimited enthusiasm for tracking their own health data via technology. However, our findings potentially explain relatively low adoption of consumer HIT, as they suggest that patients with multiple chronic illnesses consider it work to track their own data, that the data can be emotionally charged, and that they may perceive that providers do not welcome it. Similar themes have been found in some individual chronic diseases but appeared more complex because patients often encountered “illness work” connected to multiple diseases simultaneously and frequently faced additional challenges from aging or difficult comorbidities such as chronic pain, depression, and anxiety. We suggest that to make a public health impact, consumer HIT deve...

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

“You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions

Ancker¹,

Witteman²,

Hafeez³

et al. 2015

J Med Internet Res

229

200

View full text Add to dashboard Cite

show abstract

“…Attending the diabetes education group for ongoing triangulation and relying on the group for the member check could have made the final themes more representative of patients with diabetes than of patients with other chronic conditions. Our focus on information being used by patients in their interactions with the medical system also means that the types of medical information being discussed was probably narrower than the broader range described in some other PHIM literature [ 22 , 24 , 26 ].…”

Section: Discussionmentioning

confidence: 99%

“…For example, we found that individuals use both custom-made tools (such as electronic patient portals) as well as paper and pencil and a variety of other artifacts. Others have noted that patients use commercial calendars to track medical appointments, post medication checklists on refrigerator doors, or intermingle pediatric immunization records with memorabilia about the child’s milestones [ 22 , 24 , 26 ].…”

Section: Discussionmentioning

confidence: 99%

The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers

Ancker¹,

Witteman²,

Hafeez³

et al. 2015

J Med Internet Res

128

139

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BackgroundA critical problem for patients with chronic conditions who see multiple health care providers is incomplete or inaccurate information, which can contribute to lack of care coordination, low quality of care, and medical errors.ObjectiveAs part of a larger project on applications of consumer health information technology (HIT) and barriers to its use, we conducted a semistructured interview study with patients with multiple chronic conditions (MCC) with the objective of exploring their role in managing their personal health information.MethodsSemistructured interviews were conducted with patients and providers. Patients were eligible if they had multiple chronic conditions and were in regular care with one of two medical organizations in New York City; health care providers were eligible if they had experience caring for patients with multiple chronic conditions. Analysis was conducted from a grounded theory perspective, and recruitment was concluded when saturation was achieved.ResultsA total of 22 patients and 7 providers were interviewed; patients had an average of 3.5 (SD 1.5) chronic conditions and reported having regular relationships with an average of 5 providers. Four major themes arose: (1) Responsibility for managing medical information: some patients perceived information management and sharing as the responsibility of health care providers; others—particularly those who had had bad experiences in the past—took primary responsibility for information sharing; (2) What information should be shared: although privacy concerns did influence some patients’ perceptions of sharing of medical data, decisions about what to share were also heavily influenced by their understanding of health and disease and by the degree to which they understood the health care system; (3) Methods and tools varied: those patients who did take an active role in managing their records used a variety of electronic tools, paper tools, and memory; and (4) Information management as invisible work: managing transfers of medical information to solve problems was a tremendous amount of work that was largely unrecognized by the medical establishment.ConclusionsWe conclude that personal health information management should be recognized as an additional burden that MCC places upon patients. Effective structural solutions for information sharing, whether institutional ones such as care management or technological ones such as electronic health information exchange, are likely not only to improve the quality of information shared but reduce the burden on patients already weighed down by MCC.

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“…Accumulating research on PHIM from the perspective of patients demonstrates the "work" it takes to manage personal health information outside the clinic in everyday life (3,5,38,(40)(41)(42)(43). PHIM needs are well documented for some groups, such as people experiencing cancer (44)(45)(46) or chronic illness (38,47), but less specifically for older adults (9).…”

Section: Introductionmentioning

confidence: 99%

Understanding views on everyday use of personal health information: Insights from community dwelling older adults

Hartzler

Osterhage

Demiris

et al. 2017

Informatics for Health and Social Care

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Although these themes involve personal health information, existing PHIM systems that focus on disease management are generally not designed to support wellness activities. Substantial opportunity exists to fill this wellness support gap with innovative health information technology designed for older adults. Findings carry implications for the design of PHIM tools that support healthy aging and methods for engaging older adults as co-producers of this critical support.

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Health information management in the home: A human factors assessment

Cited by 18 publications

References 7 publications

“You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions

“You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions

The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers

Understanding views on everyday use of personal health information: Insights from community dwelling older adults

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