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Boundary Negotiating Artifacts in Personal Informatics: Patient-Provider Collaboration with Patient-Generated Data.

ABSTRACT: Patient-generated data is increasingly common in chronic disease care management. Smartphone applications and wearable sensors help patients more easily collect health information. However, current commercial tools often do not effectively support patients and providers in collaboration surrounding these data. This paper examines patient expectations and current collaboration practices around patient-generated data. We survey 211 patients, interview 18 patients, and re-analyze a dataset of 21 provider interviews. We find that collaboration occurs in every stage of self-tracking and that patients and providers create boundary negotiating artifacts to support the collaboration. Building upon current practices with patient-generated data, we use these theories of patient and provider collaboration to analyze misunderstandings and privacy concerns as well as identify opportunities to better support these collaborations. We reflect on the social nature of patient-provider collaboration to suggest future development of the stage-based model of personal informatics and the theory of boundary negotiating artifacts.

SUBMITTER: Chung CF

PROVIDER: S-EPMC5432205 | biostudies-literature | 2016 Feb

REPOSITORIES: biostudies-literature

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Boundary Negotiating Artifacts in Personal Informatics: Patient-Provider Collaboration with Patient-Generated Data.

Chung Chia-Fang CF Dew Kristin K Cole Allison A Zia Jasmine J Fogarty James J Kientz Julie A JA Munson Sean A SA

CSCW : proceedings of the Conference on Computer-Supported Cooperative Work. Conference on Computer-Supported Cooperative Work 20160201

Patient-generated data is increasingly common in chronic disease care management. Smartphone applications and wearable sensors help patients more easily collect health information. However, current commercial tools often do not effectively support patients and providers in collaboration surrounding these data. This paper examines patient expectations and current collaboration practices around patient-generated data. We survey 211 patients, interview 18 patients, and re-analyze a dataset of 21 pr ...[more]

PMID: 28516171

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Project description:BackgroundThere is a natural assumption that quality and efficiency are optimized when providers consistently work together and share patients. Diversity in composition and recurrence of groups that provide face-to-face care to the same patients has not previously been studied.ObjectiveClaims data enable identification of the constellation of providers caring for a single patient. To indirectly measure teamwork and provider collaboration, we measure recurrence of provider constellations and cohesion among providers.DesignRetrospective analysis of commercial healthcare claims from a single insurer.ParticipantsPatients with claims for office visits and their outpatient providers. To maximize capture of provider panels, the cohort was drawn from the four regions with the highest plan coverage. Regional outpatient provider networks were constructed with providers as nodes and number of shared patients as links.Main measuresMeasures of cohesion and stability of provider constellations derived from the networks of providers to quantify patient sharing.ResultsFor 10,325 providers and their 521,145 patients, there were 2,641,933 collaborative provider pairs sharing at least one patient. Fifty-four percent only shared a single patient, and 19 % shared two. Of 15,449,835 unique collaborative triads, 92 % shared one patient, 5 % shared two, and 0.2 % shared ten or more. Patient constellations had a median of four providers. Any precise constellation recurred rarely-89 % with exactly two providers shared just one patient and only 4 % shared over two; 97 % of constellations with exactly three providers shared just one patient. Four percent of constellations with 2+ providers were not at all cohesive, sharing only the hub patient. In the remaining constellations, a median of 93 % of provider pairs shared at least one additional patient beyond the hub patient.ConclusionStunning variability in the constellations of providers caring for patients may challenge underlying assumptions about the current state of teamwork in healthcare.

Project description:BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based medical research.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law.

Dataset Information

Boundary Negotiating Artifacts in Personal Informatics: Patient-Provider Collaboration with Patient-Generated Data.

Publications

Boundary Negotiating Artifacts in Personal Informatics: Patient-Provider Collaboration with Patient-Generated Data.

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