Prescriptions, X-rays and Grocery Lists. Designing a Personal Health Record to Support (The Invisible Work Of) Health Information Management in the Household

dc.contributor.authorPiras, Enrico Maria
dc.contributor.authorZanutto, Alberto
dc.date.accessioned2020-06-06T13:07:22Z
dc.date.available2020-06-06T13:07:22Z
dc.date.issued2010
dc.date.issued2010
dc.description.abstractFor many years the introduction of Electronic Health Records (EHRs) in medical practice has been considered the best way to provide efficient document sharing among different organizational settings. The actual results of these technologies, though, do not seem to have matched expectations. The issue of document sharing has been lately readdressed by proposing the creation of patient-controlled information and communication technologies, Personal Health Records (PHRs), providing laypeople the tools to access, manage and share their health information electronically by connecting to the existing EHRs and other institutional information systems. In this scenario, patients are called to play a major role in coordinating healthcare professionals by providing them the information they need. From a CSCW perspective the PHR offers an interesting case to reflect on cooperative work that requires new infrastructures that intersect organizational settings and extend into domestic environments. So far though, there has not been enough research to shed light on the self-care activities carried out in the households and how these integrate with the organizational practices of doctors and institutions. Our analyses show that health record keeping is an articulation work necessary for meetings with doctors to proceed smoothly. To do so, people integrate the information contained in medical documents by working on them with annotations, underlinings and integrations. Moreover, we show that health record keeping is a spatialized activity that is inextricably interwoven with the everyday routine and objects. Finally, we provide a tentative classification of three different strategies laypeople use to sort out health records: minimum effort, adaptive, networking.de
dc.identifier.doi10.1007/s10606-010-9128-5
dc.identifier.pissn1573-7551
dc.identifier.urihttp://dx.doi.org/10.1007/s10606-010-9128-5
dc.identifier.urihttps://dl.eusset.eu/handle/20.500.12015/3966
dc.publisherSpringer
dc.relation.ispartofComputer Supported Cooperative Work (CSCW): Vol. 19, No. 6
dc.relation.ispartofseriesComputer Supported Cooperative Work (CSCW)
dc.subjectElectronic health record
dc.subjectHealth record management
dc.subjectHealthcare infrastructures
dc.subjectInvisible work
dc.subjectPersonal health record
dc.subjectQualitative research
dc.subjectSelf-care
dc.titlePrescriptions, X-rays and Grocery Lists. Designing a Personal Health Record to Support (The Invisible Work Of) Health Information Management in the Householdde
dc.typeText/Journal Article
gi.citation.endPage613
gi.citation.startPage585
gi.citations.count38
gi.citations.elementAmber L. Cushing, Vanessa Reyes, Robert D. Ferguson (2023): Conversations on the Invisibility of <scp>PIM</scp>, Approaching Themes, and New Avenues of Research, In: Proceedings of the Association for Information Science and Technology 1(60), doi:10.1002/pra2.814
gi.citations.elementAlberto Zanutto (2017): ‘Two clicks and I’m in!’ Patients as co-actors in managing health data through a personal health record infrastructure, In: Health Informatics Journal 2(25), doi:10.1177/1460458217712056
gi.citations.elementEnrico Maria Piras, Alberto Zanutto (2014): “One day it will be you who tells us doctors what to do!”. Exploring the “Personal” of PHR in paediatric diabetes management, In: Information Technology &amp; People 4(27), doi:10.1108/itp-02-2013-0030
gi.citations.elementEnrico Maria Piras, Federico Cabitza, Myriam Lewkowicz, Liam Bannon (2019): Personal Health Records and Patient-Oriented Infrastructures: Building Technology, Shaping (New) Patients, and Healthcare Practitioners, In: Computer Supported Cooperative Work (CSCW) 6(28), doi:10.1007/s10606-019-09364-x
gi.citations.elementMaria R. Dahm, Andrew Georgiou, Susan Balandin, Sophie Hill, Bronwyn Hemsley (2017): Health Information Infrastructure for People with Intellectual and Developmental Disabilities (I/DD) Living in Supported Accommodation: Communication, Co-Ordination and Integration of Health Information, In: Health Communication 1(34), doi:10.1080/10410236.2017.1384431
gi.citations.elementJessica S Ancker, Holly O Witteman, Baria Hafeez, Thierry Provencher, Mary Van de Graaf, Esther Wei (2015): The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers, In: Journal of Medical Internet Research 6(17), doi:10.2196/jmir.4381
gi.citations.elementTariq Osman Andersen, Karen Dam Nielsen, Jonas Moll, Jesper Hastrup Svendsen (2019): Unpacking telemonitoring work: Workload and telephone calls to patients in implanted cardiac device care, In: International Journal of Medical Informatics, doi:10.1016/j.ijmedinf.2019.06.021
gi.citations.elementFrancisco Nunes, Tariq Andersen, Geraldine Fitzpatrick (2017): The agency of patients and carers in medical care and self-care technologies for interacting with doctors, In: Health Informatics Journal 2(25), doi:10.1177/1460458217712054
gi.citations.elementKhuloud Abou Amsha, Myriam Lewkowicz (2016): Shifting Patterns in Home Care Work: Supporting Collaboration Among Self-Employed Care Actors, In: COOP 2016: Proceedings of the 12th International Conference on the Design of Cooperative Systems, 23-27 May 2016, Trento, Italy, doi:10.1007/978-3-319-33464-6_9
gi.citations.elementAnne M. Turner, Katie Osterhage, Julie Loughran, Ian Painter, George Demiris, Andrea L. Hartzler, Elizabeth A. Phelan (2018): Emergency information management needs and practices of older adults: A descriptive study, In: International Journal of Medical Informatics, doi:10.1016/j.ijmedinf.2017.12.001
gi.citations.elementKlaudia Çarçani, Tone Bratteteig, Harald Holone, Jo Herstad (2023): EquiP: A Method to Co-Design for Cooperation, In: Computer Supported Cooperative Work (CSCW) 3(32), doi:10.1007/s10606-023-09463-w
gi.citations.elementMargunn Aanestad, Miria Grisot, Ole Hanseth, Polyxeni Vassilakopoulou (2017): Information Infrastructures for eHealth, In: Health Informatics, doi:10.1007/978-3-319-51020-0_2
gi.citations.elementClara Caldeira, Matthew Bietz, Marisol Vidauri, Yunan Chen (2017): Senior Care for Aging in Place, In: Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing, doi:10.1145/2998181.2998206
gi.citations.elementEnrico Maria Piras (2018): Kairotic and chronological knowing: diabetes logbooks in-and-out of the hospital, In: Data Technologies and Applications 1(52), doi:10.1108/dta-03-2017-0018
gi.citations.elementEnrico Maria Piras (2023): Digital cultural probes. Indagare il quotidiano, progettare tecnologie, In: SALUTE E SOCIETÀ 2(22), doi:10.3280/ses2023-002008
gi.citations.elementKhuloud Abou Amsha, Myriam Lewkowicz (2014): Observing the Work Practices of an Inter-professional Home Care Team: Supporting a Dynamic Approach for Quality Home Care Delivery, In: COOP 2014 - Proceedings of the 11th International Conference on the Design of Cooperative Systems, 27-30 May 2014, Nice (France), doi:10.1007/978-3-319-06498-7_15
gi.citations.elementKijpokin Kasemsap (2017): Analyzing the Role of Health Information Technology in Global Health Care, In: Advances in Healthcare Information Systems and Administration, doi:10.4018/978-1-5225-0920-2.ch017
gi.citations.elementPolyxeni Vassilakopoulou, Miria Grisot, Margunn Aanestad (2018): Between Personal and Common: the Design of Hybrid Information Spaces, In: Computer Supported Cooperative Work (CSCW) 3-6(27), doi:10.1007/s10606-017-9304-y
gi.citations.elementKijpokin Kasemsap (2000): Analyzing the Role of Health Information Technology in Global Health Care, In: Medical Education and Ethics, doi:10.4018/978-1-5225-0978-3.ch032
gi.citations.elementJessica S Ancker, Holly O Witteman, Baria Hafeez, Thierry Provencher, Mary Van de Graaf, Esther Wei (2015): “You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions, In: Journal of Medical Internet Research 8(17), doi:10.2196/jmir.4209
gi.citations.elementKijpokin Kasemsap (2017): Telemedicine and Electronic Health, In: Advances in Human Services and Public Health, doi:10.4018/978-1-5225-2262-1.ch009
gi.citations.elementBarbara Purin, Enrico Maria Piras (2011): Personal Health Records among Institutions, Medical Records, and Patient Wisdom: A Socio-technical Approach, In: Lecture Notes of the Institute for Computer Sciences, Social Informatics and Telecommunications Engineering, doi:10.1007/978-3-642-23635-8_19
gi.citations.elementGiulia Anichini, Chiara Natali, Federico Cabitza (2024): Invisible to Machines: Designing AI that Supports Vision Work in Radiology, In: Computer Supported Cooperative Work (CSCW) 4(33), doi:10.1007/s10606-024-09491-0
gi.citations.elementDilaver Tengilimoğlu, Fatih Orhan, Perihan Şenel Tekin, Mustafa Younis (2024): Analysis of Publications on Health Information Management Using the Science Mapping Method: A Holistic Perspective, In: Healthcare 3(12), doi:10.3390/healthcare12030287
gi.citations.elementRichard J. Holden, Yamini L.P. Karanam, Luiz Henrique Cavalcanti, Takshak Parmar, Prasanthi Kodthala, Nicole R. Fowler, Daniel R. Bateman (2018): Health information management practices in informal caregiving: An artifacts analysis and implications for IT design, In: International Journal of Medical Informatics, doi:10.1016/j.ijmedinf.2018.09.017
gi.citations.elementSally Wyatt, Anna Harris, Samantha Adams, Susan E Kelly (2013): Illness Online: Self-reported Data and Questions of Trust in Medical and Social Research, In: Theory, Culture &amp; Society 4(30), doi:10.1177/0263276413485900
gi.citations.elementAttila Bruni, Francesco Miele, Enrico Maria Piras (2019): ‘Homemade’: Building, mending, and coordinating a care network, In: Social Science &amp; Medicine, doi:10.1016/j.socscimed.2019.112449
gi.citations.elementEnrico Maria Piras (2019): Beyond self-tracking: Exploring and unpacking four emerging labels of patient data work, In: Health Informatics Journal 3(25), doi:10.1177/1460458219833121
gi.citations.elementEnrico Maria Piras, Francesco Miele (2016): Clinical self-tracking and monitoring technologies: negotiations in the ICT-mediated patient–provider relationship, In: Health Sociology Review 1(26), doi:10.1080/14461242.2016.1212316
gi.citations.elementA. Ant Ozok, Huijuan Wu, Ayse P. Gurses (2017): Exploring Patients’ Use Intention of Personal Health Record Systems: Implications for Design, In: International Journal of Human–Computer Interaction 4(33), doi:10.1080/10447318.2016.1277637
gi.citations.elementAnne Mayère, Isabelle Bazet, Angélique Roux (2012): « Zéro papier » et « pense-bêtes » à l’aune de l’informatisation du dossier de soins, In: Revue d'anthropologie des connaissances 1(6), doi:10.3917/rac.015.0154
gi.citations.elementKijpokin Kasemsap (2018): Telemedicine and Electronic Health, In: Health Economics and Healthcare Reform, doi:10.4018/978-1-5225-3168-5.ch001
gi.citations.elementNicola Mackintosh, Qian (Sarah) Gong, Michelle Hadjiconstantinou, Nervo Verdezoto (2021): Digital mediation of candidacy in maternity care: Managing boundaries between physiology and pathology, In: Social Science &amp; Medicine, doi:10.1016/j.socscimed.2021.114299
gi.citations.elementMaia Jacobs, James Clawson, Elizabeth D. Mynatt (2014): Cancer navigation, In: Proceedings of the 17th ACM conference on Computer supported cooperative work &amp; social computing, doi:10.1145/2531602.2531645
gi.citations.elementMatthew Willis (2019): I’m Trying to Find my Way of Staying Organized: the Socio-Technical Assemblages of Personal Health Information Management, In: Computer Supported Cooperative Work (CSCW) 6(28), doi:10.1007/s10606-019-09346-z
gi.citations.elementClara Caldeira, Xinning Gui, Tera L Reynolds, Matthew Bietz, Yunan Chen (2021): Managing healthcare conflicts when living with multiple chronic conditions, In: International Journal of Human-Computer Studies, doi:10.1016/j.ijhcs.2020.102494
gi.citations.elementLucrezia Canzutti, Claudia Aradau (2024): Collecting, assembling, ordering: Border politics and the invisible data work of asylum, In: Environment and Planning C: Politics and Space 7(42), doi:10.1177/23996544241230189
gi.citations.elementSamantha A. Whitman, Kathleen H. Pine, Bjorg Thorsteinsdottir, Paige Organick-Lee, Anjali Thota, Nataly R. Espinoza Suarez, Erik W. Johnston, Kasey R. Boehmer (2021): Bodily Experiences of Illness and Treatment as Information Work: The Case of Chronic Kidney Disease, In: Proceedings of the ACM on Human-Computer Interaction CSCW2(5), doi:10.1145/3479527

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