Use Of Patient-generated Data Research Articles

Alignment of Big Data Perceptions Across Levels in Healthcare: The case of New Zealand

Big data and related technologies have the potential to transform healthcare sectors by facilitating improvements to healthcare planning and delivery. Big data research highlights the importance of aligning big data implementations with business needs to achieve success. In one of the first studies to examine the influence of big data on business-IT alignment in the healthcare sector, this paper addresses the question: how do stakeholders’ perceptions of big data influence alignment between big data technologies and healthcare sector needs across macro, meso, and micro levels in the New Zealand (NZ) healthcare sector? A qualitative inquiry was conducted using semi-structured interviews to understand perceptions of big data across the NZ healthcare sector. An application of a novel theory, Theory of Sociotechnical Representations (TSR), is used to examine people’s perceptions of big data technologies and their applicability in their day-to-day work. These representations are analysed at each level and then across levels to evaluate the degree of alignment. A social dimension lens to alignment was used to explore mutual understanding of big data across the sector. The findings show alignment across the sector through the shared understanding of the importance of data quality, the increasing challenges of privacy and security, and the importance of utilising modern and new data in measuring health outcomes. Areas of misalignment include the differing definitions of big data, as well as perceptions around data ownership, data sharing, use of patient-generated data and interoperability. Both practical and theoretical contributions of the study are discussed.

Willingness to Share Data From Wearable Health and Activity Trackers: Analysis of the 2019 Health Information National Trends Survey Data

BackgroundSharing data from wearable health and activity trackers (wearables) with others may improve the health and behavioral outcomes of wearable users by generating social support and improving their ability to manage their health. Investigating individual factors that influence US adults’ willingness to share wearable data with different types of individuals may provide insights about the population subgroups that are most or least likely to benefit from wearable interventions. Specifically, it is necessary to identify digital health behaviors potentially associated with willingness to share wearable data given that the use of and engagement with various technologies may broadly influence web-based health information–sharing behaviors. ObjectiveThis study aims to identify sociodemographic, health, and digital health behavior correlates of US adults’ willingness to share wearable data with health care providers and family or friends. MethodsData for the analytic sample (N=1300) were obtained from the 2019 Health Information National Trends Survey of the National Cancer Institute. Digital health behavior measures included frequency of wearable device use, use of smartphones or tablets to help communicate with providers, use of social networking sites to share health information, and participation in a web-based health community. Multivariable logistic regression analysis of weighted data examined the associations between digital health behaviors and willingness to share wearable device data, controlling for sociodemographics and health-related characteristics. ResultsMost US adults reported willingness to share wearable data with providers (81.86%) and with family or friends (69.51%). Those who reported higher health self-efficacy (odds ratio [OR] 1.97, 95% CI 1.11-3.51), higher level of trust in providers as a source of health information (OR 1.98, 95% CI 1.12-3.49), and higher level of physical activity (OR 2.00, 95% CI 1.21-3.31) had greater odds of willingness to share data with providers. In addition, those with a higher frequency of wearable use (OR 2.15, 95% CI 1.35-3.43) and those who reported use of smartphones or tablets to help communicate with providers (OR 1.99, 95% CI 1.09-3.63) had greater odds of willingness to share data with providers. Only higher level of physical activity was associated with greater odds of willingness to share wearable data with family or friends (OR 1.70, 95% CI 1.02-2.84). Sociodemographic factors were not significantly associated with willingness to share wearable data. ConclusionsThe findings of this study suggest that, among US adult wearable users, behavior-related factors, rather than sociodemographic characteristics, are key drivers of willingness to share health information obtained from wearables with others. Moreover, behavioral correlates of willingness to share wearable data are unique to the type of recipient (ie, providers vs family or friends). Future studies could use these findings to inform the development of interventions that aim to improve the use of patient-generated data from wearable devices in health care settings.

Investigating the possibilities of using patient-generated health data in emergency care: an explorative study

AbstractIt is well known that emergency departments (EDs) are exposed to human errors and unintended events due to large patient flow, high work pressure and overload of information. Strategies for providing efficient and effective health care are therefore imperative, and health information technologies are suggested to be one of the solutions. This study sought to investigate if the use of patient-generated health data gathered through a digital patient questionnaire and visualised as a patient-generated journal (PGJ v.1.0) has the potential to improve the care delivered in EDs.MethodsUsing a mixed-method approach, the PGJ (v.1.0) was investigatedfrom key stakeholders’ perspectives. First, we examined the PGJ from a patient perspective via participant observation (n = 18) and interviews (n = 18), supported by statistical data from the PGJ (n = 56). Second, we used questionnaires to explore the physicians’ perspectives (n = 9). Lastly, two interviews were conducted with healthcare leaders from the ED. The data were compared and analysed using descriptive statistics and hermeneutic analysis.Results From the findings, it appears that patients in need of urgent care accept the use of patient-generated data, and patients highly favoured being active in their patient pathway. However, the system needed some adjustments to fit the patients’abilities in urgent situations.The physicians expressed mixed attitudes towards the PGJ: the majority agreed that the system needed some adjustments in order for the full benefits to be gained, but thought that it had potential to improve their work processes when fully developed.Conclusions This study concludes that the use of patient-generated data is well accepted by patients in an urgent setting, and that the PGJ has the potential to improve quality of care in patient pathways by adding value to patient flows as well as clinical workflows. The concept of utilising patient-generated health data in emergency care should therefore be further developed and investigated.

Preferred Functions of Personal Health Records in Rural Primary Health Clinics in Canada: Health Care Team Perspectives

Personal health records (PHR) provide opportunities for improved patient engagement, collection of patient-generated data, and overcome health-system inefficiencies. While PHR use is increasing, uptake in rural populations is lower than in urban areas. The study aimed to identify priorities for PHR functionality and gain insights into meaning, value, and use of patient-generated data for rural primary care providers. We performed PHR preimplementation focus groups with rural providers and their health care teams from five primary care clinics in a sparsely populated mountainous region of British Columbia, Canada to obtain their understanding of PHR functionality, needs, and perceived challenges. Eight general practitioners (GP), five medical office assistants, two nurse practitioners (NP), and two registered nurses (14 females and 3 males) participated in focus groups held at their respective clinics. Providers (GPs, NPs, and RNs) had been practicing for a median of 9.5 (range = 1-38) years and had used an electronic medical record for 7.0 (1-20) years. Participants expressed interest in incorporating functionality around two-way communication and appointment scheduling, previsit data gathering, patient and provider data sharing, virtual care including visits using videoconferencing tools, and postvisit sharing of educational materials. Three further themes emerged from the focus groups: (1) the context in which the providers' practice matters, (2) the need for providing patients and providers with choice (e.g., which data to share, who gets to initiate/respond in communications, and processes around virtual care visits), and (3) perceived risks of system use (e.g., increased complexity for older patients and workload barriers for the health care team). Rural primary care teams perceived PHR opportunities for increased patient engagement and access to patient-generated data, while worries about changes in workflow were the biggest perceived risk. Recommendations for PHR adoption in a rural primary health network include setting provider-patient expectations about response times, ability to share notes selectively, and automatically augmented note-taking from virtual-care visits.

Interrelationships Between Patients' Data Tracking Practices, Data Sharing Practices, and Health Literacy: Onsite Survey Study.

BackgroundAlthough the use of patient-generated data (PGD) in the optimization of patient care shows great promise, little is known about whether patients who track their PGD necessarily share the data with their clinicians. Meanwhile, health literacy—an important construct that captures an individual’s ability to manage their health and to engage with their health care providers—has often been neglected in prior studies focused on PGD tracking and sharing. To leverage the full potential of PGD, it is necessary to bridge the gap between patients’ data tracking and data sharing practices by first understanding the interrelationships between these practices and the factors contributing to these practices.ObjectiveThis study aims to systematically examine the interrelationships between PGD tracking practices, data sharing practices, and health literacy among individual patients.MethodsWe surveyed 109 patients at the time they met with a clinician at a university health center, unlike prior research that often examined patients’ retrospective experience after some time had passed since their clinic visit. The survey consisted of 39 questions asking patients about their PGD tracking and sharing practices based on their current clinical encounter. The survey also contained questions related to the participants’ health literacy. All the participants completed the survey on a tablet device. The onsite survey study enabled us to collect ecologically valid data based on patients’ immediate experiences situated within their clinic visit.ResultsWe found no evidence that tracking PGD was related to self-reports of having sufficient information to manage one’s health; however, the number of data types participants tracked positively related to their self-assessed ability to actively engage with health care providers. Participants’ data tracking practices and their health literacy did not relate to their data sharing practices; however, their ability to engage with health care providers positively related to their willingness to share their data with clinicians in the future. Participants reported several benefits of, and barriers to, sharing their PGD with clinicians.ConclusionsAlthough tracking PGD could help patients better engage with health care providers, it may not provide patients with sufficient information to manage their health. The gaps between tracking and sharing PGD with health care providers call for efforts to inform patients of how their data relate to their health and to facilitate efficient clinician-patient communication. To realize the full potential of PGD and to promote individuals’ health literacy, empowering patients to effectively track and share their PGD is important—both technologies and health care providers can play important roles.

Understanding Individual and Collaborative Problem-Solving with Patient-Generated Data

Making effective use of patient-generated data (PGD) is challenging for both patients and providers. Designing systems to support collaborative and individual use of PGD is a topic of importance in CSCW, considering the limitations of informatics tools. To inform better system design, we conducted a study including focus groups, observations and interviews with patients and providers to understand how PGD is interpreted and used. We found that while PGD is useful for identifying and solving disease-related problems, the following differences in patient-provider perceptions challenge its effective use - different perceptions about what is a problem, selecting what kinds of problems to focus on, and using different data representations. Drawing on these insights, we reflect on two specific conceptualizations of disease management behavior (sensemaking and problem-solving) as they relate to data specific activities of patients and providers and provide design suggestions for tools to support collaborative and individual use of PGD.