{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,13]],"date-time":"2026-04-13T20:41:26Z","timestamp":1776112886294,"version":"3.50.1"},"reference-count":128,"publisher":"Association for Computing Machinery (ACM)","issue":"CSCW3","license":[{"start":{"date-parts":[[2021,1,5]],"date-time":"2021-01-05T00:00:00Z","timestamp":1609804800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000092","name":"National Library of Medicine","doi-asserted-by":"crossref","award":["R01 LM013043, T15 LM007079"],"award-info":[{"award-number":["R01 LM013043, T15 LM007079"]}],"id":[{"id":"10.13039\/100000092","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["dl.acm.org"],"crossmark-restriction":true},"short-container-title":["Proc. ACM Hum.-Comput. Interact."],"published-print":{"date-parts":[[2021,1,5]]},"abstract":"<jats:p>In chronic conditions, patients and providers need support in understanding and managing illness over time. Focusing on endometriosis, an enigmatic chronic condition, we conducted interviews with specialists and focus groups with patients to elicit their work in care specifically pertaining to dealing with an enigmatic disease, both independently and in partnership, and how technology could support these efforts. We found that the work to care for the illness, including reflecting on the illness experience and planning for care, is significantly compounded by the complex nature of the disease: enigmatic condition means uncertainty and frustration in care and management; the multi-factorial and systemic features of endometriosis without any guidance to interpret them overwhelm patients and providers; the different temporal resolutions of this chronic condition confuse both patients and providers; and patients and providers negotiate medical knowledge and expertise in an attempt to align their perspectives. We note how this added complexity demands that patients and providers work together to find common ground and align perspectives, and propose three design opportunities (considerations to construct a holistic picture of the patient, design features to reflect and make sense of the illness, and opportunities and mechanisms to correct misalignments and plan for care) and implications to support patients and providers in their care work. Specifically, the enigmatic nature of endometriosis necessitates complementary approaches from human-centered computing and artificial intelligence, and thus opens a number of future research avenues.<\/jats:p>","DOI":"10.1145\/3434170","type":"journal-article","created":{"date-parts":[[2021,1,5]],"date-time":"2021-01-05T18:43:37Z","timestamp":1609872217000},"page":"1-24","update-policy":"https:\/\/doi.org\/10.1145\/crossmark-policy","source":"Crossref","is-referenced-by-count":37,"title":["Divided We Stand"],"prefix":"10.1145","volume":"4","author":[{"given":"Adrienne","family":"Pichon","sequence":"first","affiliation":[{"name":"Columbia University, New York City, NY, USA"}]},{"given":"Kayla","family":"Schiffer","sequence":"additional","affiliation":[{"name":"Columbia University, New York City, NY, USA"}]},{"given":"Emma","family":"Horan","sequence":"additional","affiliation":[{"name":"Columbia University, New York City, NY, USA"}]},{"given":"Bria","family":"Massey","sequence":"additional","affiliation":[{"name":"Columbia University, New York City, NY, USA"}]},{"given":"Suzanne","family":"Bakken","sequence":"additional","affiliation":[{"name":"Columbia University, New York City, NY, USA"}]},{"given":"Lena","family":"Mamykina","sequence":"additional","affiliation":[{"name":"Columbia University, New York City, NY, USA"}]},{"given":"Noemie","family":"Elhadad","sequence":"additional","affiliation":[{"name":"Columbia University, New York City, NY, USA"}]}],"member":"320","published-online":{"date-parts":[[2021,1,5]]},"reference":[{"key":"e_1_2_2_1_1","volume-title":"Endometriosis: A Disease That Remains Enigmatic. Int Sch Res Notices","author":"Aci\u00e9n P","year":"2013","unstructured":"P Aci\u00e9n and I Velasco . 2013 . Endometriosis: A Disease That Remains Enigmatic. Int Sch Res Notices (2013). P Aci\u00e9n and I Velasco. 2013. Endometriosis: A Disease That Remains Enigmatic. Int Sch Res Notices (2013)."},{"key":"e_1_2_2_2_1","volume-title":"Clinical diagnosis of endometriosis: a call to action. Am J Obstet Gynecol","author":"Agarwal SK","year":"2019","unstructured":"SK Agarwal , C Chapron , LC Giudice , MR Laufer , N Leyland , SA Missmer , SS Singh , and HS Taylor . 2019. Clinical diagnosis of endometriosis: a call to action. Am J Obstet Gynecol ( 2019 ). SK Agarwal, C Chapron, LC Giudice, MR Laufer, N Leyland, SA Missmer, SS Singh, and HS Taylor. 2019. Clinical diagnosis of endometriosis: a call to action. Am J Obstet Gynecol (2019)."},{"key":"e_1_2_2_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.rbmo.2017.10.106"},{"key":"e_1_2_2_4_1","doi-asserted-by":"publisher","DOI":"10.1145\/3313831.3376809"},{"key":"e_1_2_2_5_1","volume-title":"Telling Stories About Dynamic Networks with Graph Comics (CHI '16)","author":"Bach B","year":"2016","unstructured":"B Bach , N Kerracher , KW Hall , S Carpendale , J Kennedy , and N Henry Riche . 2016 . Telling Stories About Dynamic Networks with Graph Comics (CHI '16) . ACM, 3670--3682. B Bach, N Kerracher, KW Hall, S Carpendale, J Kennedy, and N Henry Riche. 2016. Telling Stories About Dynamic Networks with Graph Comics (CHI '16). ACM, 3670--3682."},{"key":"e_1_2_2_6_1","doi-asserted-by":"publisher","DOI":"10.1109\/MCG.2017.33"},{"key":"e_1_2_2_7_1","first-page":"1","article-title":"Design Patterns for Data Comics (CHI '18)","volume":"38","author":"Bach B","year":"2018","unstructured":"B Bach , Z Wang , M Farinella , D Murray-Rust , and N Henry Riche . 2018 . Design Patterns for Data Comics (CHI '18) . ACM , 38 : 1 -- 38 :12. B Bach, Z Wang, M Farinella, D Murray-Rust, and N Henry Riche. 2018. Design Patterns for Data Comics (CHI '18). ACM, 38:1--38:12.","journal-title":"ACM"},{"key":"e_1_2_2_8_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp1109283"},{"key":"e_1_2_2_9_1","doi-asserted-by":"publisher","DOI":"10.4414\/smw.2014.14073"},{"key":"e_1_2_2_10_1","first-page":"373","article-title":"Accumulating and Coordinating","volume":"8","author":"Berg M","year":"1999","unstructured":"M Berg . 1999 . Accumulating and Coordinating : Occasions for Information Technologies in Medical Work. CSCW , Vol. 8 , 4 (1999), 373 -- 401 . M Berg. 1999. Accumulating and Coordinating: Occasions for Information Technologies in Medical Work. CSCW, Vol. 8, 4 (1999), 373--401.","journal-title":"Occasions for Information Technologies in Medical Work. CSCW"},{"key":"e_1_2_2_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1533-8525.1997.tb00490.x"},{"key":"e_1_2_2_12_1","first-page":"1","article-title":"Supporting Communication About Values Between People with Multiple Chronic Conditions and Their Providers (CHI '19)","volume":"470","author":"Berry ABL","year":"2019","unstructured":"ABL Berry , CY Lim , T Hirsch , AL Hartzler , LM Kiel , ZA Bermet , and JD Ralston . 2019 . Supporting Communication About Values Between People with Multiple Chronic Conditions and Their Providers (CHI '19) . ACM , 470 : 1 -- 470 :14. ABL Berry, CY Lim, T Hirsch, AL Hartzler, LM Kiel, ZA Bermet, and JD Ralston. 2019. Supporting Communication About Values Between People with Multiple Chronic Conditions and Their Providers (CHI '19). ACM, 470:1--470:14.","journal-title":"ACM"},{"key":"e_1_2_2_13_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.288.14.1775"},{"key":"e_1_2_2_14_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_2_15_1","doi-asserted-by":"publisher","DOI":"10.1109\/TVCG.2016.2614803"},{"key":"e_1_2_2_16_1","volume-title":"Endometriosis: an overview of Cochrane Reviews. Cochrane Database Syst Rev 3","author":"Brown J","year":"2014","unstructured":"J Brown and C Farquhar . 2014. Endometriosis: an overview of Cochrane Reviews. Cochrane Database Syst Rev 3 ( 2014 ). J Brown and C Farquhar. 2014. Endometriosis: an overview of Cochrane Reviews. Cochrane Database Syst Rev 3 (2014)."},{"key":"e_1_2_2_17_1","doi-asserted-by":"publisher","DOI":"10.1145\/3027063.3053080"},{"key":"e_1_2_2_18_1","first-page":"1","article-title":"Designing for Reflection on Shared HIV Health Information (CHItaly '19)","volume":"3","author":"Bussone A","year":"2019","unstructured":"A Bussone , S Stumpf , and S Wilson . 2019 . Designing for Reflection on Shared HIV Health Information (CHItaly '19) . ACM , 3 : 1 -- 3 :10. A Bussone, S Stumpf, and S Wilson. 2019. Designing for Reflection on Shared HIV Health Information (CHItaly '19). ACM, 3:1--3:10.","journal-title":"ACM"},{"key":"e_1_2_2_19_1","volume-title":"Information Work in Bone Marrow Transplant: Reducing Misalignment of Perspectives (CSCW '17)","author":"B\u00fcy\u00fckt\u00fcr AG","year":"2017","unstructured":"AG B\u00fcy\u00fckt\u00fcr and MS Ackerman . 2017 . Information Work in Bone Marrow Transplant: Reducing Misalignment of Perspectives (CSCW '17) . ACM, 1740--1752. AG B\u00fcy\u00fckt\u00fcr and MS Ackerman. 2017. Information Work in Bone Marrow Transplant: Reducing Misalignment of Perspectives (CSCW '17). ACM, 1740--1752."},{"key":"e_1_2_2_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(96)00221-3"},{"key":"e_1_2_2_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2011.02.004"},{"key":"e_1_2_2_22_1","doi-asserted-by":"publisher","DOI":"10.1145\/3154862.3154881"},{"key":"e_1_2_2_23_1","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.4364"},{"key":"e_1_2_2_24_1","doi-asserted-by":"publisher","DOI":"10.1145\/2818048.2819926"},{"key":"e_1_2_2_25_1","doi-asserted-by":"publisher","DOI":"10.1145\/3314394"},{"key":"e_1_2_2_26_1","doi-asserted-by":"crossref","unstructured":"HH Clark and SE Brennan. 1991. Grounding in communication. In Perspectives on socially shared cognition. APA 127--149.  HH Clark and SE Brennan. 1991. Grounding in communication. In Perspectives on socially shared cognition. APA 127--149.","DOI":"10.1037\/10096-006"},{"key":"e_1_2_2_27_1","doi-asserted-by":"publisher","DOI":"10.1177\/001316446002000104"},{"key":"e_1_2_2_28_1","doi-asserted-by":"publisher","DOI":"10.1136\/jamia.2000.0070277"},{"key":"e_1_2_2_29_1","volume-title":"Cognitive Informatics in Health and Biomedicine: Case Studies on Critical Care, Complexity and Errors,","author":"Collins SA","unstructured":"SA Collins , L Mamykina , DA Jordan , and DR Kaufman . 2014. Clinical Artifacts as a Treasure Map to Navigate Handoff Complexity . In Cognitive Informatics in Health and Biomedicine: Case Studies on Critical Care, Complexity and Errors, , VL Patel, DR Kaufman, and T Cohen (Eds.). Springer London , 317--339. SA Collins, L Mamykina, DA Jordan, and DR Kaufman. 2014. Clinical Artifacts as a Treasure Map to Navigate Handoff Complexity. In Cognitive Informatics in Health and Biomedicine: Case Studies on Critical Care, Complexity and Errors,, VL Patel, DR Kaufman, and T Cohen (Eds.). Springer London, 317--339."},{"key":"e_1_2_2_30_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2011.11.007"},{"key":"e_1_2_2_31_1","doi-asserted-by":"publisher","DOI":"10.1007\/BF00989485"},{"key":"e_1_2_2_32_1","unstructured":"JM Corbin and A Strauss. 1988. Unending work and care: Managing chronic illness at home. Jossey-Bass.  JM Corbin and A Strauss. 1988. Unending work and care: Managing chronic illness at home. Jossey-Bass."},{"key":"e_1_2_2_33_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1440-172X.2003.00396.x"},{"key":"e_1_2_2_34_1","doi-asserted-by":"publisher","DOI":"10.1109\/TVCG.2018.2796591"},{"key":"e_1_2_2_35_1","doi-asserted-by":"publisher","DOI":"10.1159\/000358392"},{"key":"e_1_2_2_36_1","doi-asserted-by":"publisher","DOI":"10.1145\/3130911"},{"key":"e_1_2_2_37_1","first-page":"1","article-title":"Patient Perspectives on Self-Management Technologies for Chronic Fatigue Syndrome (CHI '19)","volume":"222","author":"Davies T","year":"2019","unstructured":"T Davies , SL Jones , and RM Kelly . 2019 . Patient Perspectives on Self-Management Technologies for Chronic Fatigue Syndrome (CHI '19) . ACM , 222 : 1 -- 222 :13. T Davies, SL Jones, and RM Kelly. 2019. Patient Perspectives on Self-Management Technologies for Chronic Fatigue Syndrome (CHI '19). ACM, 222:1--222:13.","journal-title":"ACM"},{"key":"e_1_2_2_38_1","doi-asserted-by":"publisher","DOI":"10.1001\/archinte.1996.00440120070006"},{"key":"e_1_2_2_39_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1369-7625.2007.00441.x"},{"key":"e_1_2_2_40_1","doi-asserted-by":"crossref","unstructured":"F Du C Plaisant N Spring and B Shneiderman. 2017. Finding Similar People to Guide Life Choices: Challenge Design and Evaluation (CHI '17). ACM 5498--5544.  F Du C Plaisant N Spring and B Shneiderman. 2017. Finding Similar People to Guide Life Choices: Challenge Design and Evaluation (CHI '17). ACM 5498--5544.","DOI":"10.1145\/3025453.3025777"},{"key":"e_1_2_2_41_1","doi-asserted-by":"crossref","unstructured":"DA Epstein A Borning and J Fogarty. 2013. Fine-grained sharing of sensed physical activity: a value sensitive approach (UbiComp '13). ACM 489--498.  DA Epstein A Borning and J Fogarty. 2013. Fine-grained sharing of sensed physical activity: a value sensitive approach (UbiComp '13). ACM 489--498.","DOI":"10.1145\/2493432.2493433"},{"key":"e_1_2_2_42_1","doi-asserted-by":"publisher","DOI":"10.1145\/2598510.2598558"},{"key":"e_1_2_2_43_1","doi-asserted-by":"crossref","unstructured":"DA Epstein A Ping J Fogarty and SA Munson. 2015. A Lived Informatics Model of Personal Informatics (UbiComp '15). ACM 731--742.  DA Epstein A Ping J Fogarty and SA Munson. 2015. A Lived Informatics Model of Personal Informatics (UbiComp '15). ACM 731--742.","DOI":"10.1145\/2750858.2804250"},{"key":"e_1_2_2_44_1","doi-asserted-by":"publisher","DOI":"10.1177\/016224399502000402"},{"key":"e_1_2_2_45_1","unstructured":"ESAC. 2020. Developing a Strategically Coordinated Registry Network (CRN) for Women?s Health Technologies Final Report. (2020) 52.  ESAC. 2020. Developing a Strategically Coordinated Registry Network (CRN) for Women?s Health Technologies Final Report. (2020) 52."},{"key":"e_1_2_2_46_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.cppeds.2010.10.006"},{"key":"e_1_2_2_47_1","doi-asserted-by":"publisher","DOI":"10.1093\/jamia\/ocy083"},{"key":"e_1_2_2_48_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMcp1000274"},{"key":"e_1_2_2_49_1","doi-asserted-by":"publisher","DOI":"10.1145\/2957276.2957293"},{"key":"e_1_2_2_50_1","first-page":"1","article-title":"Beyond the Patient Portal: Supporting Needs of Hospitalized Patients (CHI '19)","volume":"366","author":"Haldar S","year":"2019","unstructured":"S Haldar , SR Mishra , M Khelifi , AH Pollack , and W Pratt . 2019 . Beyond the Patient Portal: Supporting Needs of Hospitalized Patients (CHI '19) . ACM , 366 : 1 -- 366 :14. S Haldar, SR Mishra, M Khelifi, AH Pollack, and W Pratt. 2019. Beyond the Patient Portal: Supporting Needs of Hospitalized Patients (CHI '19). ACM, 366:1--366:14.","journal-title":"ACM"},{"key":"e_1_2_2_51_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-005X.2005.00151.x"},{"key":"e_1_2_2_52_1","doi-asserted-by":"publisher","DOI":"10.1057\/palgrave.ivs.9500167"},{"key":"e_1_2_2_53_1","doi-asserted-by":"publisher","DOI":"10.1207\/S15324796ABM2503_04"},{"key":"e_1_2_2_54_1","doi-asserted-by":"crossref","unstructured":"MK Hong U Lakshmi K Do S Prahalad T Olson RI Arriaga and L Wilcox. 2020. Using Diaries to Probe the Illness Experiences of Adolescent Patients and Parental Caregivers (CHI '20). ACM 1--16.  MK Hong U Lakshmi K Do S Prahalad T Olson RI Arriaga and L Wilcox. 2020. Using Diaries to Probe the Illness Experiences of Adolescent Patients and Parental Caregivers (CHI '20). ACM 1--16.","DOI":"10.1145\/3313831.3376426"},{"key":"e_1_2_2_55_1","first-page":"1","article-title":"Visual ODLs: Co-Designing Patient-Generated Observations of Daily Living to Support Data-Driven Conversations in Pediatric Care (CHI '18)","volume":"476","author":"Hong MK","year":"2018","unstructured":"MK Hong , U Lakshmi , TA Olson , and L Wilcox . 2018 . Visual ODLs: Co-Designing Patient-Generated Observations of Daily Living to Support Data-Driven Conversations in Pediatric Care (CHI '18) . ACM , 476 : 1 -- 476 :13. MK Hong, U Lakshmi, TA Olson, and L Wilcox. 2018. Visual ODLs: Co-Designing Patient-Generated Observations of Daily Living to Support Data-Driven Conversations in Pediatric Care (CHI '18). ACM, 476:1--476:13.","journal-title":"ACM"},{"key":"e_1_2_2_56_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10916-012-9861-z"},{"key":"e_1_2_2_57_1","volume-title":"Crossing the Quality Chasm: A New Health System for the 21st Century","author":"Institute of Medicine Committee on Quality of Health Care in America. 2001.","unstructured":"Institute of Medicine Committee on Quality of Health Care in America. 2001. Crossing the Quality Chasm: A New Health System for the 21st Century . National Academies Press (US) . Institute of Medicine Committee on Quality of Health Care in America. 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. National Academies Press (US)."},{"key":"e_1_2_2_58_1","doi-asserted-by":"publisher","DOI":"10.1177\/1473871611412817"},{"key":"e_1_2_2_59_1","doi-asserted-by":"publisher","DOI":"10.1145\/3359261"},{"key":"e_1_2_2_60_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10586-013-0315-2"},{"key":"e_1_2_2_61_1","doi-asserted-by":"crossref","unstructured":"R Karkar J Schroeder DA Epstein LR Pina J Scofield J Fogarty JA Kientz SA Munson R Vilardaga and J Zia. 2017. TummyTrials: A Feasibility Study of Using Self-Experimentation to Detect Individualized Food Triggers (CHI '17). ACM 6850--6863.  R Karkar J Schroeder DA Epstein LR Pina J Scofield J Fogarty JA Kientz SA Munson R Vilardaga and J Zia. 2017. TummyTrials: A Feasibility Study of Using Self-Experimentation to Detect Individualized Food Triggers (CHI '17). ACM 6850--6863.","DOI":"10.1145\/3025453.3025480"},{"key":"e_1_2_2_62_1","doi-asserted-by":"publisher","DOI":"10.1093\/jamia\/ocv150"},{"key":"e_1_2_2_63_1","doi-asserted-by":"crossref","unstructured":"DH Kim E Hoque and M Agrawala. 2020. Answering Questions about Charts and Generating Visual Explanations (CHI '20). ACM 1--13.  DH Kim E Hoque and M Agrawala. 2020. Answering Questions about Charts and Generating Visual Explanations (CHI '20). ACM 1--13.","DOI":"10.1145\/3313831.3376467"},{"key":"e_1_2_2_64_1","doi-asserted-by":"publisher","DOI":"10.1109\/TVCG.2017.2744118"},{"key":"e_1_2_2_65_1","volume-title":"Designing a Novel Interface for Data-Driven Medical Consultations (CHI","author":"Kim Y","year":"2017","unstructured":"Y Kim , E Heo , H Lee , S Ji , J Choi , JW Kim , J Lee , and S Yoo . 2017. Prescribing 10,000 Steps Like Aspirin : Designing a Novel Interface for Data-Driven Medical Consultations (CHI 2017 ). ACM , 5787--5799. Y Kim, E Heo, H Lee, S Ji, J Choi, JW Kim, J Lee, and S Yoo. 2017. Prescribing 10,000 Steps Like Aspirin: Designing a Novel Interface for Data-Driven Medical Consultations (CHI 2017). ACM, 5787--5799."},{"key":"e_1_2_2_66_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2010.1208"},{"key":"e_1_2_2_67_1","doi-asserted-by":"crossref","unstructured":"HK Kong and K Karahalios. 2020. Addressing Cognitive and Emotional Barriers in Parent-Clinician Communication through Behavioral Visualization Webtools (CHI '20). ACM 1--12.  HK Kong and K Karahalios. 2020. Addressing Cognitive and Emotional Barriers in Parent-Clinician Communication through Behavioral Visualization Webtools (CHI '20). ACM 1--12.","DOI":"10.1145\/3313831.3376181"},{"key":"e_1_2_2_68_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1369-7625.2004.00296.x"},{"key":"e_1_2_2_69_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2702.2003.00826.x"},{"key":"e_1_2_2_70_1","first-page":"307","article-title":"Boundary Negotiating Artifacts","volume":"16","author":"Lee CP","year":"2007","unstructured":"CP Lee . 2007 . Boundary Negotiating Artifacts : Unbinding the Routine of Boundary Objects and Embracing Chaos in Collaborative Work. CSCW , Vol. 16 , 3 (2007), 307 -- 339 . CP Lee. 2007. Boundary Negotiating Artifacts: Unbinding the Routine of Boundary Objects and Embracing Chaos in Collaborative Work. CSCW, Vol. 16, 3 (2007), 307--339.","journal-title":"CSCW"},{"key":"e_1_2_2_71_1","volume-title":"A Stage-Based Model of Personal Informatics Systems. CHI","author":"Li I","year":"2010","unstructured":"I Li , A Dey , and J Forlizzi . 2010. A Stage-Based Model of Personal Informatics Systems. CHI ( 2010 ), 10. I Li, A Dey, and J Forlizzi. 2010. A Stage-Based Model of Personal Informatics Systems. CHI (2010), 10."},{"key":"e_1_2_2_72_1","first-page":"1","article-title":"Facilitating Self-reflection About Values and Self-care Among Individuals with Chronic Conditions (CHI '19)","volume":"655","author":"Lim CY","year":"2019","unstructured":"CY Lim , ABL Berry , AL Hartzler , T Hirsch , DS Carrell , ZA Bermet , and JD Ralston . 2019 . Facilitating Self-reflection About Values and Self-care Among Individuals with Chronic Conditions (CHI '19) . ACM , 655 : 1 -- 655 :12. CY Lim, ABL Berry, AL Hartzler, T Hirsch, DS Carrell, ZA Bermet, and JD Ralston. 2019. Facilitating Self-reflection About Values and Self-care Among Individuals with Chronic Conditions (CHI '19). ACM, 655:1--655:12.","journal-title":"ACM"},{"key":"e_1_2_2_73_1","volume-title":"Satisfaction with medical support in women with endometriosis. PloS one","author":"Lukas I","year":"2018","unstructured":"I Lukas , A Kohl-Schwartz , K Geraedts , M Rauchfuss , MM W\u00f6lfler , \u00e4berlin, SO Von , M Eberhard , B Imthurn , P Imesch , and B Leeners . 2018. Satisfaction with medical support in women with endometriosis. PloS one , Vol. 13 , 11 ( 2018 ). I Lukas, A Kohl-Schwartz, K Geraedts, M Rauchfuss, MM W\u00f6lfler, \u00e4berlin, SO Von, M Eberhard, B Imthurn, P Imesch, and B Leeners. 2018. Satisfaction with medical support in women with endometriosis. PloS one, Vol. 13, 11 (2018)."},{"key":"e_1_2_2_74_1","volume-title":"Ethical Considerations in Pervasive Health Research (PervasiveHealth '16)","author":"MacLeod H","year":"2016","unstructured":"H MacLeod , M Jacobs , K Siek , K Connelly , and ED Mynatt . 2016 . Ethical Considerations in Pervasive Health Research (PervasiveHealth '16) . ICST, 326--329. H MacLeod, M Jacobs, K Siek, K Connelly, and ED Mynatt. 2016. Ethical Considerations in Pervasive Health Research (PervasiveHealth '16). ICST, 326--329."},{"key":"e_1_2_2_75_1","doi-asserted-by":"publisher","DOI":"10.1145\/2702123.2702494"},{"key":"e_1_2_2_76_1","doi-asserted-by":"publisher","DOI":"10.1109\/TVCG.2014.2346573"},{"key":"e_1_2_2_77_1","doi-asserted-by":"publisher","DOI":"10.1145\/1357054.1357131"},{"key":"e_1_2_2_78_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2015.06.006"},{"key":"e_1_2_2_79_1","doi-asserted-by":"publisher","DOI":"10.1093\/jamia\/ocv189"},{"key":"e_1_2_2_80_1","doi-asserted-by":"crossref","unstructured":"G Marcu AK Dey and SB Kiesler. 2014. Designing for collaborative reflection. In PervasiveHealth.  G Marcu AK Dey and SB Kiesler. 2014. Designing for collaborative reflection. In PervasiveHealth.","DOI":"10.4108\/icst.pervasivehealth.2014.254987"},{"key":"e_1_2_2_81_1","volume-title":"Diabetes self-monitoring devices and transformations in \"patient work\". Revue d'anthropologie des connaissances","author":"Mathieu-Fritz A","year":"2017","unstructured":"A Mathieu-Fritz and C Guillot . 2017. Diabetes self-monitoring devices and transformations in \"patient work\". Revue d'anthropologie des connaissances , Vol. 11 , 4 ( 2017 ). A Mathieu-Fritz and C Guillot. 2017. Diabetes self-monitoring devices and transformations in \"patient work\". Revue d'anthropologie des connaissances, Vol. 11, 4 (2017)."},{"key":"e_1_2_2_82_1","doi-asserted-by":"publisher","DOI":"10.1145\/3173574.3174139"},{"key":"e_1_2_2_83_1","first-page":"1","article-title":"Considering Agency and Data Granularity in the Design of Visualization Tools (CHI '18)","volume":"638","author":"M\u00e9ndez GG","year":"2018","unstructured":"GG M\u00e9ndez , MA Nacenta , and U Hinrichs . 2018 . Considering Agency and Data Granularity in the Design of Visualization Tools (CHI '18) . ACM , 638 : 1 -- 638 :14. GG M\u00e9ndez, MA Nacenta, and U Hinrichs. 2018. Considering Agency and Data Granularity in the Design of Visualization Tools (CHI '18). ACM, 638:1--638:14.","journal-title":"ACM"},{"key":"e_1_2_2_84_1","volume-title":"Crafting a View of Self-Tracking Data in the Clinical Visit (CHI '17)","author":"Mentis HM","unstructured":"HM Mentis , A Komlodi , K Schrader , M Phipps , Ann GB, K Yarbrough , and L Shulman . 2017. Crafting a View of Self-Tracking Data in the Clinical Visit (CHI '17) . ACM Press , 5800--5812. HM Mentis, A Komlodi, K Schrader, M Phipps, Ann GB, K Yarbrough, and L Shulman. 2017. Crafting a View of Self-Tracking Data in the Clinical Visit (CHI '17). ACM Press, 5800--5812."},{"key":"e_1_2_2_85_1","doi-asserted-by":"publisher","DOI":"10.1145\/1718918.1718975"},{"key":"e_1_2_2_86_1","first-page":"1","article-title":"Supporting Coping with Parkinson's Disease Through Self Tracking (CHI '19)","volume":"107","author":"Mishra SR","year":"2019","unstructured":"SR Mishra , P Klasnja , J MacDuffie Woodburn , EB Hekler , L Omberg , M Kellen , and L Mangravite . 2019 . Supporting Coping with Parkinson's Disease Through Self Tracking (CHI '19) . ACM , 107 : 1 -- 107 :16. SR Mishra, P Klasnja, J MacDuffie Woodburn, EB Hekler, L Omberg, M Kellen, and L Mangravite. 2019. Supporting Coping with Parkinson's Disease Through Self Tracking (CHI '19). ACM, 107:1--107:16.","journal-title":"ACM"},{"key":"e_1_2_2_87_1","first-page":"1","article-title":"Supporting Collaborative Health Tracking in the Hospital: Patients' Perspectives (CHI '18)","volume":"650","author":"Mishra SR","year":"2018","unstructured":"SR Mishra , AD Miller , S Haldar , M Khelifi , J Eschler , RG Elera , AH Pollack , and W Pratt . 2018 . Supporting Collaborative Health Tracking in the Hospital: Patients' Perspectives (CHI '18) . ACM , 650 : 1 -- 650 :14. SR Mishra, AD Miller, S Haldar, M Khelifi, J Eschler, RG Elera, AH Pollack, and W Pratt. 2018. Supporting Collaborative Health Tracking in the Hospital: Patients' Perspectives (CHI '18). ACM, 650:1--650:14.","journal-title":"ACM"},{"key":"e_1_2_2_88_1","volume-title":"The Body Multiple: Ontology in Medical Practice","author":"Mol A","unstructured":"A Mol . 2003. The Body Multiple: Ontology in Medical Practice . Duke University Press . A Mol. 2003. The Body Multiple: Ontology in Medical Practice. Duke University Press."},{"key":"e_1_2_2_89_1","volume-title":"The Logic of Care: Health and the Problem of Patient Choice","author":"Mol A","unstructured":"A Mol . 2008. The Logic of Care: Health and the Problem of Patient Choice . Routledge . A Mol. 2008. The Logic of Care: Health and the Problem of Patient Choice. Routledge."},{"key":"e_1_2_2_90_1","volume-title":"Biomedical informatics","author":"Musen MA","unstructured":"MA Musen , B Middleton , and RA Greenes . 2014. Clinical decision-support systems . In Biomedical informatics . Springer , 643--674. MA Musen, B Middleton, and RA Greenes. 2014. Clinical decision-support systems. In Biomedical informatics. Springer, 643--674."},{"key":"e_1_2_2_91_1","doi-asserted-by":"publisher","DOI":"10.1145\/2803173"},{"key":"e_1_2_2_92_1","doi-asserted-by":"crossref","unstructured":"T Owen J Pearson H Thimbleby and G Buchanan. 2015. ConCap: Designing to Empower Individual Reflection on Chronic Conditions Using Mobile Apps (MobileHCI '15). ACM 105--114.  T Owen J Pearson H Thimbleby and G Buchanan. 2015. ConCap: Designing to Empower Individual Reflection on Chronic Conditions Using Mobile Apps (MobileHCI '15). ACM 105--114.","DOI":"10.1145\/2785830.2785881"},{"key":"e_1_2_2_93_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.2001.01850.x"},{"key":"e_1_2_2_94_1","doi-asserted-by":"publisher","DOI":"10.1145\/1460563.1460587"},{"key":"e_1_2_2_95_1","doi-asserted-by":"publisher","DOI":"10.1080\/14461242.2016.1212316"},{"key":"e_1_2_2_96_1","doi-asserted-by":"crossref","unstructured":"M Rabbi MH Aung M Zhang and T Choudhury. 2015. MyBehavior: automatic personalized health feedback from user behaviors and preferences using smartphones (UbiComp). ACM 707--718.  M Rabbi MH Aung M Zhang and T Choudhury. 2015. MyBehavior: automatic personalized health feedback from user behaviors and preferences using smartphones (UbiComp). ACM 707--718.","DOI":"10.1145\/2750858.2805840"},{"key":"e_1_2_2_97_1","doi-asserted-by":"crossref","unstructured":"E Rader K Cotter and J Cho. 2018. Explanations as Mechanisms for Supporting Algorithmic Transparency (CHI '18). ACM 1--13.  E Rader K Cotter and J Cho. 2018. Explanations as Mechanisms for Supporting Algorithmic Transparency (CHI '18). ACM 1--13.","DOI":"10.1145\/3173574.3173677"},{"key":"e_1_2_2_98_1","doi-asserted-by":"publisher","DOI":"10.1145\/3134723"},{"key":"e_1_2_2_99_1","doi-asserted-by":"publisher","DOI":"10.1177\/1359105316643069"},{"key":"e_1_2_2_100_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijmedinf.2004.05.003"},{"key":"e_1_2_2_101_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10461-017-2014-0"},{"key":"e_1_2_2_102_1","doi-asserted-by":"crossref","unstructured":"J Schroeder CF Chung DA Epstein R Karkar A Parsons N Murinova J Fogarty and SA Munson. 2018. Examining Self-Tracking by People with Migraine: Goals Needs and Opportunities in a Chronic Health Condition (DIS '18). ACM 135--148.  J Schroeder CF Chung DA Epstein R Karkar A Parsons N Murinova J Fogarty and SA Munson. 2018. Examining Self-Tracking by People with Migraine: Goals Needs and Opportunities in a Chronic Health Condition (DIS '18). ACM 135--148.","DOI":"10.1145\/3196709.3196738"},{"key":"e_1_2_2_103_1","doi-asserted-by":"crossref","unstructured":"J Schroeder J Hoffswell CF Chung J Fogarty S Munson and J Zia. 2017. Supporting Patient-Provider Collaboration to Identify Individual Triggers using Food and Symptom Journals (CSCW '17). ACM 1726--1739.  J Schroeder J Hoffswell CF Chung J Fogarty S Munson and J Zia. 2017. Supporting Patient-Provider Collaboration to Identify Individual Triggers using Food and Symptom Journals (CSCW '17). ACM 1726--1739.","DOI":"10.1145\/2998181.2998276"},{"key":"e_1_2_2_104_1","doi-asserted-by":"publisher","DOI":"10.1145\/3369809"},{"key":"e_1_2_2_105_1","doi-asserted-by":"publisher","DOI":"10.1080\/13698570903013649"},{"key":"e_1_2_2_106_1","doi-asserted-by":"publisher","DOI":"10.5172\/hesr.18.2.194"},{"key":"e_1_2_2_107_1","doi-asserted-by":"publisher","DOI":"10.1109\/TVCG.2010.179"},{"key":"e_1_2_2_108_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2018.17163"},{"key":"e_1_2_2_109_1","first-page":"9","article-title":"Layers of Silence","volume":"8","author":"Star SL","year":"1999","unstructured":"SL Star and A Strauss . 1999 . Layers of Silence , Arenas of Voice: The Ecology of Visible and Invisible Work. CSCW , Vol. 8 , 1 (1999), 9 -- 30 . SL Star and A Strauss. 1999. Layers of Silence, Arenas of Voice: The Ecology of Visible and Invisible Work. CSCW, Vol. 8, 1 (1999), 9--30.","journal-title":"CSCW"},{"key":"e_1_2_2_110_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00779-013-0707-6"},{"key":"e_1_2_2_111_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12124"},{"key":"e_1_2_2_112_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1533-8525.1985.tb00212.x"},{"key":"e_1_2_2_113_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1533-8525.1988.tb01249.x"},{"key":"e_1_2_2_114_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.ep10487954"},{"key":"e_1_2_2_115_1","doi-asserted-by":"publisher","DOI":"10.1145\/223248.223263"},{"key":"e_1_2_2_116_1","doi-asserted-by":"crossref","unstructured":"J Tholander and M Normark. 2020. Crafting Personal Information - Resistance Imperfection and Self-Creation in Bullet Journaling (CHI '20). ACM 1--13.  J Tholander and M Normark. 2020. Crafting Personal Information - Resistance Imperfection and Self-Creation in Bullet Journaling (CHI '20). ACM 1--13.","DOI":"10.1145\/3313831.3376410"},{"key":"e_1_2_2_117_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2003.11.009"},{"key":"e_1_2_2_118_1","volume-title":"Proc Machine Learning for Health Care (MLHC '18)","author":"Urteaga I","year":"2018","unstructured":"I Urteaga , M McKillop , S Lipsky-Gorman , and N Elhadad . 2018 . Phenotyping endometriosis through mixed membership models of self-tracking data . In Proc Machine Learning for Health Care (MLHC '18) . 1--22. I Urteaga, M McKillop, S Lipsky-Gorman, and N Elhadad. 2018. Phenotyping endometriosis through mixed membership models of self-tracking data. In Proc Machine Learning for Health Care (MLHC '18). 1--22."},{"key":"e_1_2_2_119_1","doi-asserted-by":"publisher","DOI":"10.1136\/amiajnl-2014-002826"},{"key":"e_1_2_2_120_1","doi-asserted-by":"crossref","unstructured":"C Watson R Kirkham and A Kharrufa. 2020. PIP Kit: An Exploratory Investigation into using Lifelogging to support Disability Benefit Claimants (CHI '20). ACM 1--14.  C Watson R Kirkham and A Kharrufa. 2020. PIP Kit: An Exploratory Investigation into using Lifelogging to support Disability Benefit Claimants (CHI '20). ACM 1--14.","DOI":"10.1145\/3313831.3376215"},{"key":"e_1_2_2_121_1","volume-title":"The Quantified Patient in the Doctor's Office: Challenges & Opportunities (CHI '16)","author":"West P","unstructured":"P West , R Giordano , M Van Kleek , and N Shadbolt . 2016. The Quantified Patient in the Doctor's Office: Challenges & Opportunities (CHI '16) . ACM Press , 3066--3078. P West, R Giordano, M Van Kleek, and N Shadbolt. 2016. The Quantified Patient in the Doctor's Office: Challenges & Opportunities (CHI '16). ACM Press, 3066--3078."},{"key":"e_1_2_2_122_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2009.01.032"},{"key":"e_1_2_2_123_1","doi-asserted-by":"publisher","DOI":"10.2196\/10896"},{"key":"e_1_2_2_124_1","first-page":"1","article-title":"This Girl is on Fire\": Sensemaking in an Online Health Community for Vulvodynia (CHI '19)","volume":"129","author":"Young AL","year":"2019","unstructured":"AL Young and AD Miller . 2019 . \" This Girl is on Fire\": Sensemaking in an Online Health Community for Vulvodynia (CHI '19) . ACM , 129 : 1 -- 129 :13. AL Young and AD Miller. 2019. \"This Girl is on Fire\": Sensemaking in an Online Health Community for Vulvodynia (CHI '19). ACM, 129:1--129:13.","journal-title":"ACM"},{"key":"e_1_2_2_125_1","volume-title":"Partners instead of patients: Women negotiating power and knowledge within medical encounters for endometriosis. Fem Psychol","author":"Young K","year":"2019","unstructured":"K Young , J Fisher , and M Kirkman . 2019. Partners instead of patients: Women negotiating power and knowledge within medical encounters for endometriosis. Fem Psychol ( 2019 ). K Young, J Fisher, and M Kirkman. 2019. Partners instead of patients: Women negotiating power and knowledge within medical encounters for endometriosis. Fem Psychol (2019)."},{"key":"e_1_2_2_126_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jvlc.2014.12.003"},{"key":"e_1_2_2_127_1","volume-title":"Relational Aspects in Patient-provider Interactions: A Facial Paralysis Case Study (CHI '20)","author":"Zhu H","year":"2020","unstructured":"H Zhu , ZJ Moffa , and JM Carroll . 2020 . Relational Aspects in Patient-provider Interactions: A Facial Paralysis Case Study (CHI '20) . ACM, 1--14. H Zhu, ZJ Moffa, and JM Carroll. 2020. Relational Aspects in Patient-provider Interactions: A Facial Paralysis Case Study (CHI '20). ACM, 1--14."},{"key":"e_1_2_2_128_1","volume-title":"Nat Rev Dis Primers","author":"Zondervan KT","year":"2018","unstructured":"KT Zondervan , CM Becker , K Koga , SA Missmer , RN Taylor , and P Vigan\u00f2 . 2018. Endometriosis (Primer). Nat Rev Dis Primers ( 2018 ). KT Zondervan, CM Becker, K Koga, SA Missmer, RN Taylor, and P Vigan\u00f2. 2018. Endometriosis (Primer). Nat Rev Dis Primers (2018)."}],"container-title":["Proceedings of the ACM on Human-Computer Interaction"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dl.acm.org\/doi\/10.1145\/3434170","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/dl.acm.org\/doi\/pdf\/10.1145\/3434170","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,6,17]],"date-time":"2025-06-17T21:24:34Z","timestamp":1750195474000},"score":1,"resource":{"primary":{"URL":"https:\/\/dl.acm.org\/doi\/10.1145\/3434170"}},"subtitle":["The Collaborative Work of Patients and Providers in an Enigmatic Chronic Disease"],"short-title":[],"issued":{"date-parts":[[2021,1,5]]},"references-count":128,"journal-issue":{"issue":"CSCW3","published-print":{"date-parts":[[2021,1,5]]}},"alternative-id":["10.1145\/3434170"],"URL":"https:\/\/doi.org\/10.1145\/3434170","relation":{},"ISSN":["2573-0142"],"issn-type":[{"value":"2573-0142","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,1,5]]},"assertion":[{"value":"2021-01-05","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}