Engagement, Empowerment and Patient Generated Health Data

Burns, Kara

doi:10.5204/thesis.eprints.114076

Cited by 3 publications

(4 citation statements)

References 205 publications

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“…Several values—self-determination, social, and emotional—come from patients using photos and videos to reflect upon, capture, and share personal health experiences, rather than specific data. Self-determination value (39/110, 35.5% articles) arises when patients “confirm and integrate their beliefs (cognitive, spiritual, or other) into health care services, asserting a degree of control over a health care situation congruent with psychological empowerment” [ 6 ]. We identified self-determination value from photos and videos through enhanced knowledge, for example, by examining the personal meanings of smoking and related social influences when quitting smoking [ 15 , 98 , 100 ].…”

Section: Resultsmentioning

confidence: 99%

“…Current evidence suggests that for patients, PGHD support the self-management of disease, promote partnership with providers, enable people to gain social support within the peer network, and facilitate the creation of different types of value [ 6 - 9 ]. Health service providers are also increasingly interested in assessing patient health outside the health care setting, for example, through patient-reported outcome measures (PROMs) [ 10 ].…”

Section: Introductionmentioning

confidence: 99%

“…Both photos and videos can aid patients in capturing and discussing unique information during consultations, and conversely, they offer prompts to health care professionals to ask questions that may not be asked otherwise. Furthermore, social media (eg, YouTube and PatientsLikeMe) allow patients to share not only data but also personal experiences and knowledge through photos and videos, which make them interesting resources for other patients, health care professionals, and health care organizations [ 6 , 16 ].…”

Section: Introductionmentioning

confidence: 99%

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Patient-Generated Health Photos and Videos Across Health and Well-being Contexts: Scoping Review

Ploderer¹,

Aghdam²,

Burns³

2022

J Med Internet Res

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Background Patient-generated health data are increasingly used to record health and well-being concerns and engage patients in clinical care. Patient-generated photographs and videos are accessible and meaningful to patients, making them especially relevant during the current COVID-19 pandemic. However, a systematic review of photos and videos used by patients across different areas of health and well-being is lacking. Objective This review aims to synthesize the existing literature on the health and well-being contexts in which patient-generated photos and videos are used, the value gained by patients and health professionals, and the challenges experienced. Methods Guided by a framework for scoping reviews, we searched eight health databases (CINAHL, Cochrane Library, Embase, PsycINFO, PubMed, MEDLINE, Scopus, and Web of Science) and one computing database (ACM), returning a total of 28,567 studies. After removing duplicates and screening based on the predefined inclusion criteria, we identified 110 relevant articles. Data were charted and articles were analyzed following an iterative thematic approach with the assistance of NVivo software (version 12; QSR International). Results Patient-generated photos and videos are used across a wide range of health care services (39/110, 35.5% articles), for example, to diagnose skin lesions, assess dietary intake, and reflect on personal experiences during therapy. In addition, patients use them to self-manage health and well-being concerns (33/110, 30%) and to share personal health experiences via social media (36/110, 32.7%). Photos and videos create significant value for health care (59/110, 53.6%), where images support diagnosis, explanation, and treatment (functional value). They also provide value directly to patients through enhanced self-determination (39/110, 35.4%), social (33/110, 30%), and emotional support (21/110, 19.1%). However, several challenges emerge when patients create, share, and examine photos and videos, such as limited accessibility (16/110, 14.5%), incomplete image sets (23/110, 20.9%), and misinformation through photos and videos shared on social media (17/110, 15.5%). Conclusions This review shows that photos and videos engage patients in meaningful ways across different health care activities (eg, diagnosis, treatment, and self-care) for various health conditions. Although photos and videos require effort to capture and involve challenges when patients want to use them in health care, they also engage and empower patients, generating unique value. This review highlights areas for future research and strategies for addressing these challenges.

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Patient-Generated Health Photos and Videos Across Health and Well-being Contexts: Scoping Review

Ploderer¹,

Aghdam²,

Burns³

2022

J Med Internet Res

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“…38 As the majority of studies did not include participants from key HIV populations, such as women, people who are transgender or people who inject drugs, knowledge of PGData use in these communities remains limited. 15 The current review's bias towards high-income settings further limits its generalisability given the global HIV burden lies predominantly in low-income and middle-income settings. 39 Furthermore, digital inequalities due to limited access and poor digital literacy 40 41 will impact acceptability, feasibility and inequalities in PGData use, with the COVID-19 pandemic starkly highlighting these digital divides.…”

Section: Individual and Contextual Differencesmentioning

confidence: 96%

Patient-generated data in the management of HIV: a scoping review

et al. 2021

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ObjectivesPatient-generated data (PGData) are an emergent research area and may improve HIV care. The objectives of this scoping review were to synthesise, evaluate and make recommendations based on the available literature regarding PGData use in HIV care.DesignScoping review.Data sourcesEmbase, Medline, CINAHL Plus, Web of Science, Scopus, PsycINFO and Emcare databases.Eligibility criteriaStudies involving PGData use within HIV care for people living with HIV and/or healthcare professionals (HCPs) published before February 2021.Data extraction and synthesisData were extracted using a table and the Mixed Methods Appraisal Tool was used to assess empirical rigour. We used thematic analysis to evaluate content.Results11 articles met the eligibility criteria. Studies were observational, predominantly concerned hypothetical or novel digital platforms, mainly conducted in high-income settings, and had small sample sizes (range=10–160). There were multiple definitions of PGData. In the majority of studies (n=9), participants were people living with HIV, with a few studies including HCPs, informatics specialists or mixed participant groups. Participants living with HIV were aged 23–78 years, mostly men, of diverse ethnicities, and had low educational, health literacy and income levels.We identified four key themes: (1) Perceptions of PGData and associated digital platforms; (2) Opportunities; (3) Anticipated barriers and (4) Potential impact on patient–HCP relationships.ConclusionsUse of PGData within HIV care warrants further study, especially with regard to digital inequalities, data privacy and security. There is a need for longitudinal data on use within HIV in a variety of settings with a broad range of users, including impact on clinical outcomes. This will allow greater understanding of the role of PGData use in improving the health and well-being of people living with HIV, which is increasingly pertinent as digital healthcare becomes more widespread as a result of COVID-19.

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Patient-Generated Health Photos and Videos Across Health and Well-being Contexts: Scoping Review (Preprint)

Ploderer¹,

Aghdam²,

Burns³

2021

Preprint

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BACKGROUND Patient-generated health data are increasingly used to record health and well-being concerns and engage patients in clinical care. Patient-generated photographs and videos are accessible and meaningful to patients, making them especially relevant during the current COVID-19 pandemic. However, a systematic review of photos and videos used by patients across different areas of health and well-being is lacking. OBJECTIVE This review aims to synthesize the existing literature on the health and well-being contexts in which patient-generated photos and videos are used, the value gained by patients and health professionals, and the challenges experienced. METHODS Guided by a framework for scoping reviews, we searched eight health databases (CINAHL, Cochrane Library, Embase, PsycINFO, PubMed, MEDLINE, Scopus, and Web of Science) and one computing database (ACM), returning a total of 28,567 studies. After removing duplicates and screening based on the predefined inclusion criteria, we identified 110 relevant articles. Data were charted and articles were analyzed following an iterative thematic approach with the assistance of NVivo software (version 12; QSR International). RESULTS Patient-generated photos and videos are used across a wide range of health care services (39/110, 35.5% articles), for example, to diagnose skin lesions, assess dietary intake, and reflect on personal experiences during therapy. In addition, patients use them to self-manage health and well-being concerns (33/110, 30%) and to share personal health experiences via social media (36/110, 32.7%). Photos and videos create significant value for health care (59/110, 53.6%), where images support diagnosis, explanation, and treatment (functional value). They also provide value directly to patients through enhanced self-determination (39/110, 35.4%), social (33/110, 30%), and emotional support (21/110, 19.1%). However, several challenges emerge when patients create, share, and examine photos and videos, such as limited accessibility (16/110, 14.5%), incomplete image sets (23/110, 20.9%), and misinformation through photos and videos shared on social media (17/110, 15.5%). CONCLUSIONS This review shows that photos and videos engage patients in meaningful ways across different health care activities (eg, diagnosis, treatment, and self-care) for various health conditions. Although photos and videos require effort to capture and involve challenges when patients want to use them in health care, they also engage and empower patients, generating unique value. This review highlights areas for future research and strategies for addressing these challenges.

show abstract

Engagement, Empowerment and Patient Generated Health Data

Cited by 3 publications

References 205 publications

Patient-Generated Health Photos and Videos Across Health and Well-being Contexts: Scoping Review

Patient-Generated Health Photos and Videos Across Health and Well-being Contexts: Scoping Review

Patient-generated data in the management of HIV: a scoping review

Patient-Generated Health Photos and Videos Across Health and Well-being Contexts: Scoping Review (Preprint)

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