Literature DB >> 28516171

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

Chia-Fang Chung1, Kristin Dew1, Allison Cole2, Jasmine Zia3, James Fogarty4, Julie A Kientz1,4, Sean A Munson1,4.   

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.

Entities:  

Keywords:  ACM Classification Keywords: H.5.m. Information interfaces and presentation (e.g; HCI): Miscellaneous; Personal informatics; boundary negotiating artifacts; chronic disease management; patient-generated data; patient-provider collaboration; self-tracking

Year:  2016        PMID: 28516171      PMCID: PMC5432205          DOI: 10.1145/2818048.2819926

Source DB:  PubMed          Journal:  CSCW Conf Comput Support Coop Work


  22 in total

1.  Screening for and management of obesity in adults: U.S. Preventive Services Task Force recommendation statement.

Authors:  Virginia A Moyer
Journal:  Ann Intern Med       Date:  2012-09-04       Impact factor: 25.391

2.  A retrospective study on patient characteristics and telehealth alerts indicative of key medical events for heart failure patients at a home health agency.

Authors:  Kavita Radhakrishnan; Kathryn Bowles; Alexandra Hanlon; Maxim Topaz; Jesse Chittams
Journal:  Telemed J E Health       Date:  2013-06-28       Impact factor: 3.536

3.  All-cause health care charges among managed care patients with constipation and comorbid irritable bowel syndrome.

Authors:  Debanjali Mitra; Keith L Davis; Robert W Baran
Journal:  Postgrad Med       Date:  2011-05       Impact factor: 3.840

4.  Barriers and Negative Nudges: Exploring Challenges in Food Journaling.

Authors:  Felicia Cordeiro; Daniel A Epstein; Edison Thomaz; Elizabeth Bales; Arvind K Jagannathan; Gregory D Abowd; James Fogarty
Journal:  Proc SIGCHI Conf Hum Factor Comput Syst       Date:  2015-04

5.  Designing for collaborative interpretation in telemonitoring: re-introducing patients as diagnostic agents.

Authors:  Tariq Andersen; Pernille Bjørn; Finn Kensing; Jonas Moll
Journal:  Int J Med Inform       Date:  2010-11-09       Impact factor: 4.046

6.  Self-management for women with irritable bowel syndrome.

Authors:  Margaret M Heitkemper; Monica E Jarrett; Rona L Levy; Kevin C Cain; Robert L Burr; Andrew Feld; Pam Barney; Pam Weisman
Journal:  Clin Gastroenterol Hepatol       Date:  2004-07       Impact factor: 11.382

7.  Online disease management of diabetes: engaging and motivating patients online with enhanced resources-diabetes (EMPOWER-D), a randomized controlled trial.

Authors:  Paul C Tang; J Marc Overhage; Albert Solomon Chan; Nancy L Brown; Bahar Aghighi; Martin P Entwistle; Siu Lui Hui; Shauna M Hyde; Linda H Klieman; Charlotte J Mitchell; Anthony J Perkins; Lubna S Qureshi; Tanya A Waltimyer; Leigha J Winters; Charles Y Young
Journal:  J Am Med Inform Assoc       Date:  2012-11-20       Impact factor: 4.497

8.  Probing the benefits of real-time tracking during cancer care.

Authors:  Rupa A Patel; Predrag Klasnja; Andrea Hartzler; Kenton T Unruh; Wanda Pratt
Journal:  AMIA Annu Symp Proc       Date:  2012-11-03

9.  More Than Telemonitoring: Health Provider Use and Nonuse of Life-Log Data in Irritable Bowel Syndrome and Weight Management.

Authors:  Chia-Fang Chung; Jonathan Cook; Elizabeth Bales; Jasmine Zia; Sean A Munson
Journal:  J Med Internet Res       Date:  2015-08-21       Impact factor: 5.428

10.  Use of electronic dietary assessment tools in primary care: an interdisciplinary perspective.

Authors:  Carolina Bonilla; Paula Brauer; Dawna Royall; Heather Keller; Rhona M Hanning; Alba DiCenso
Journal:  BMC Med Inform Decis Mak       Date:  2015-02-25       Impact factor: 2.796

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  34 in total

1.  Divided We Stand: The Collaborative Work of Patients and Providers in an Enigmatic Chronic Disease.

Authors:  Adrienne Pichon; Kayla Schiffer; Emma Horan; Bria Massey; Suzanne Bakken; Lena Mamykina; Noémie Elhadad
Journal:  Proc ACM Hum Comput Interact       Date:  2021-01

Review 2.  Physician preparedness for big genomic data: a review of genomic medicine education initiatives in the United States.

Authors:  Caryn Kseniya Rubanovich; Cynthia Cheung; Jess Mandel; Cinnamon S Bloss
Journal:  Hum Mol Genet       Date:  2018-08-01       Impact factor: 6.150

3.  "It just seems outside my health": How Patients with Chronic Conditions Perceive Communication Boundaries with Providers.

Authors:  Catherine Lim; Andrew B L Berry; Tad Hirsch; Andrea L Hartzler; Edward H Wagner; Evette Ludman; James D Ralston
Journal:  DIS (Des Interact Syst Conf)       Date:  2016-06

Review 4.  Present and Future Trends in Consumer Health Informatics and Patient-Generated Health Data.

Authors:  A M Lai; P-Y S Hsueh; Y K Choi; R R Austin
Journal:  Yearb Med Inform       Date:  2017-09-11

5.  Provider Perspectives on Integrating Sensor-Captured Patient-Generated Data in Mental Health Care.

Authors:  Ada Ng; Rachel Kornfield; Stephen M Schueller; Alyson K Zalta; Michael Brennan; Madhu Reddy
Journal:  Proc ACM Hum Comput Interact       Date:  2019-11

6.  Patient generated health data use in clinical practice: A systematic review.

Authors:  George Demiris; Sarah J Iribarren; Katherine Sward; Solim Lee; Rumei Yang
Journal:  Nurs Outlook       Date:  2019-04-26       Impact factor: 3.250

7.  Being (In)Visible: Privacy, Transparency, and Disclosure in the Self-Management of Bipolar Disorder.

Authors:  Justin Petelka; Lucy Van Kleunen; Liam Albright; Elizabeth Murnane; Stephen Voida; Jaime Snyder
Journal:  Proc SIGCHI Conf Hum Factor Comput Syst       Date:  2020-04

8.  Supporting Patient-Provider Collaboration to Identify Individual Triggers using Food and Symptom Journals.

Authors:  Jessica Schroeder; Jane Hoffswell; Chia-Fang Chung; James Fogarty; Sean Munson; Jasmine Zia
Journal:  CSCW Conf Comput Support Coop Work       Date:  2017-02-25

9.  Supporting Collaborative Health Tracking in the Hospital: Patients' Perspectives.

Authors:  Sonali R Mishra; Andrew D Miller; Shefali Haldar; Maher Khelifi; Jordan Eschler; Rashmi G Elera; Ari H Pollack; Wanda Pratt
Journal:  Proc SIGCHI Conf Hum Factor Comput Syst       Date:  2018-04-21

10.  mHealth and patient generated health data: stakeholder perspectives on opportunities and barriers for transforming healthcare.

Authors:  Danielle C Lavallee; Jenney R Lee; Elizabeth Austin; Richard Bloch; Sarah O Lawrence; Debbe McCall; Sean A Munson; Mara B Nery-Hurwit; Dagmar Amtmann
Journal:  Mhealth       Date:  2020-01-05
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