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"It's good to know you're not a stranger every time": Communication about Values Between Patients with Multiple Chronic Conditions and Healthcare Providers

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Published:06 December 2017Publication History
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Abstract

When patients' decisions about health care priorities conflict with those of their health care providers, patients' health outcomes suffer. Patients' values for health and well-being influence their healthcare priorities, but recent work suggests that the values discussed in clinical settings do not reflect the full breadth of patients' values. To address an evidence gap regarding how discussions about values occur in clinical settings, we conducted a field study with patients with multiple chronic conditions and their health care providers, including clinical observations, interviews, and home visits. We report on the extent to which certain categories of patients' values identified in prior research were discussed in clinic visits. We then discuss how patients and providers coordinated their perspectives to establish connections among patients' values and health concerns. These findings have implications for the design of systems to support patient-provider communication to incorporate patients' values and promote concordant priorities for health care.

References

  1. Rikke Aarhus, Stinne Aaløkke Ballegaard, and Thomas Riisgaard Hansen. 2009. The eDiary: Bridging home and hospital through healthcare technology. In ECSCW 2009, 63--83.Google ScholarGoogle ScholarCross RefCross Ref
  2. Tariq Andersen, Jorgen Bansler, Finn Kensing, Jonas Moll, and Karen Dam Nielsen. 2014. Alignment of Concerns: A Design Rationale for Patient Participation in eHealth. In 2014 47th Hawaii International Conference on System Sciences. Google ScholarGoogle ScholarDigital LibraryDigital Library
  3. Tariq Andersen, Pernille Bjørn, Finn Kensing, and Jonas Moll. 2011. Designing for collaborative interpretation in telemonitoring: Re-introducing patients as diagnostic agents. Int. J. Med. Inf. 80, 8 (August 2011), e112--e126.Google ScholarGoogle ScholarCross RefCross Ref
  4. Gerard F Anderson. 2010. Chronic care: making the case for ongoing care. Robert Wood Johnson Foundation, Princeton, NJ.Google ScholarGoogle Scholar
  5. Elizabeth A Bayliss, John F Steiner, Douglas H Fernald, Lori A Crane, and Deborah S Main. 2003. Descriptions of Barriers to Self-Care by Persons with Comorbid Chronic Diseases. Ann. Fam. Med. 1, 1 (May 2003), 15--21.Google ScholarGoogle ScholarCross RefCross Ref
  6. B. Berger, J. W. Hopp, and V. Raettig. 1975. Values Clarification and the Cardiac Patient. Health Educ. Behav. 3, 2 (January 1975), 191--199.Google ScholarGoogle Scholar
  7. Andrew BL Berry, Catherine Lim, Andrea L Hartzler, Tad Hirsch, Evette Ludman, Edward H Wagner, and James D Ralston. In press. Eliciting Values of Patients with Multiple Chronic Conditions: Evaluation of a Patient-centered Framework. In AMIA Annual Symposium Proceedings.Google ScholarGoogle Scholar
  8. Andrew BL Berry, Catherine Lim, Andrea L Hartzler, Tad Hirsch, Evette Ludman, Edward H Wagner, and James D Ralston. 2017. Creating Conditions for Patients' Values to Emerge in Clinical Conversations: Perspectives of Health Care Team Members. In ACM Conference on Designing Interactive Systems. Google ScholarGoogle ScholarDigital LibraryDigital Library
  9. Andrew BL Berry, Catherine Lim, Andrea L Hartzler, Tad Hirsch, Edward H Wagner, Evette Ludman, and James D Ralston. 2017. How Values Shape Collaboration Between Patients with Multiple Chronic Conditions and Spousal Caregivers. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. Google ScholarGoogle ScholarDigital LibraryDigital Library
  10. Liana Rada Borza, Cristina Gavrilovici, and René Stockman. 2014. Ethical Models Of Physician--Patient Relationship Revisited With Regard To Patient Autonomy, Values And Patient Education. Rev. Med. Chir. Soc. Med. Nat. Iasi 119, 2 (2014), 496--501.Google ScholarGoogle Scholar
  11. Virginia Braun and Victoria Clarke. 2006. Using thematic analysis in psychology. Qual. Res. Psychol. 3, 2 (January 2006), 77--101.Google ScholarGoogle ScholarCross RefCross Ref
  12. Patti Brennan and Wendy Swanberg. 2013. Listening in the moment. interactions 20, 5 (September 2013), 22--25. Google ScholarGoogle ScholarDigital LibraryDigital Library
  13. Maggie Breslin, Rebecca J. Mullan, and Victor M. Montori. 2008. The design of a decision aid about diabetes medications for use during the consultation with patients with type 2 diabetes. Patient Educ. Couns. 73, 3 (December 2008), 465--472.Google ScholarGoogle ScholarCross RefCross Ref
  14. Ayşe G. Büyüktür and Mark S. Ackerman. 2017. Information Work in Bone Marrow Transplant: Reducing Misalignment of Perspectives. In Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing - CSCW '17. Google ScholarGoogle ScholarDigital LibraryDigital Library
  15. Yunan Chen, Karen Cheng, Charlotte Tang, Katie A. Siek, and Jakob E. Bardram. 2013. Is my doctor listening to me? In CHI '13 Extended Abstracts on Human Factors in Computing Systems on - CHI EA '13.Google ScholarGoogle Scholar
  16. Yunan Chen, Victor Ngo, Sidney Harrison, and Victoria Duong. 2011. Unpacking exam-room computing. In Proceedings of the 2011 annual conference on Human factors in computing systems - CHI '11.Google ScholarGoogle ScholarDigital LibraryDigital Library
  17. Christopher AKY Chong, Ing-je Chen, Gary Naglie, and Murray D. Krahn. 2009. How Well Do Guidelines Incorporate Evidence on Patient Preferences? J. Gen. Intern. Med. 24, 8 (April 2009), 977--982.Google ScholarGoogle ScholarCross RefCross Ref
  18. Chia-Fang Chung, Jonathan Cook, Elizabeth Bales, Jasmine Zia, and Sean A Munson. 2015. More than telemonitoring: Health provider use and nonuse of life-log data in irritable bowel syndrome and weight management. J. Med. Internet Res. 17, 8 (2015), e203.Google ScholarGoogle ScholarCross RefCross Ref
  19. Deborah Cohen and Benjamin Crabtree. 2006. Qualitative research guidelines project. Retrieved from http://www.qualres.org/index.htmlGoogle ScholarGoogle Scholar
  20. Juliet Corbin and Anselm Strauss. 1985. Managing chronic illness at home: three lines of work. Qual. Sociol. 8, 3 (1985), 224--247.Google ScholarGoogle ScholarCross RefCross Ref
  21. Benjamin F Crabtree and William F Miller. 1992. A template approach to text analysis: developing and using codebooks. (1992).Google ScholarGoogle Scholar
  22. Bich N. Dang, Robert A. Westbrook, Sarah M. Njue, and Thomas P. Giordano. 2017. Building trust and rapport early in the new doctor-patient relationship: a longitudinal qualitative study. BMC Med. Educ. 17, 1 (February 2017).Google ScholarGoogle ScholarCross RefCross Ref
  23. Norman K Denzin. 1978. Sociological methods: A sourcebook. McGraw-Hill Companies.Google ScholarGoogle Scholar
  24. Ronald M. Epstein and Ellen Peters. 2009. Beyond Information. JAMA 302, 2 (July 2009), 195.Google ScholarGoogle ScholarCross RefCross Ref
  25. Terri R. Fried, Mary Tinetti, Joe Agostini, Lynne Iannone, and Virginia Towle. 2011. Health outcome prioritization to elicit preferences of older persons with multiple health conditions. Patient Educ. Couns. 83, 2 (May 2011), 278--282.Google ScholarGoogle ScholarCross RefCross Ref
  26. Terri R. Fried, Mary E. Tinetti, and Lynne Iannone. 2010. Primary Care Clinicians' Experiences With Treatment Decision Making for Older Persons With Multiple Conditions. Arch. Intern. Med. 171, 1 (September 2010).Google ScholarGoogle ScholarCross RefCross Ref
  27. Batya Friedman, Peter H Kahn Jr, Alan Borning, and Alina Huldtgren. 2013. Value Sensitive Design and Information Systems. In Philosophy of Engineering and Technology. Springer, 55--95.Google ScholarGoogle Scholar
  28. Richard W Grant, Alyce S Adams, Elizabeth A Bayliss, and Michele Heisler. 2013. Establishing visit priorities for complex patients: A summary of the literature and conceptual model to guide innovative interventions. In Healthcare, 117--122.Google ScholarGoogle Scholar
  29. Richard William Grant, Andrea Altschuler, Connie Si Uratsu, Gabriela Sanchez, Julie Ann Schmittdiel, Alyce Sophia Adams, and Michele Heisler. 2016. Primary care visit preparation and communication for patients with poorly controlled diabetes: A qualitative study of patients and physicians. Prim. Care Diabetes (December 2016).Google ScholarGoogle Scholar
  30. Greg Guest, Kathleen MacQueen, and Emily Namey. 2012. Applied Thematic Analysis. SAGE Publications, Inc.Google ScholarGoogle Scholar
  31. Lara Houston, Steven J Jackson, Daniela K Rosner, Syed Ishtiaque Ahmed, Meg Young, and Laewoo Kang. 2016. Values in Repair. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems, 1403--1414. Google ScholarGoogle ScholarDigital LibraryDigital Library
  32. Jina Huh and Mark S. Ackerman. 2012. Collaborative Help in Chronic Disease Management: Supporting Individualized Problems. In Proceedings of the ACM 2012 conference on Computer Supported Cooperative Work - CSCW 2012. Google ScholarGoogle ScholarDigital LibraryDigital Library
  33. Institute of Medicine. 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. The National Academies Press, Washington, DC. Retrieved August 1, 2016 fromGoogle ScholarGoogle Scholar
  34. Michele J. Karel, Elizabeth A. Mulligan, Annette Walder, Lindsey A. Martin, Jennifer Moye, and Aanand D. Naik. 2015. Valued life abilities among veteran cancer survivors. Health Expect. 19, 3 (January 2015), 679--690.Google ScholarGoogle Scholar
  35. Wayne J. Katon, Elizabeth H. B. Lin, Michael Von Korff, Paul Ciechanowski, Evette J. Ludman, Bessie Young, Do Peterson, Carolyn M. Rutter, Mary McGregor, and David McCulloch. 2010. Collaborative Care for Patients with Depression and Chronic Illnesses. N. Engl. J. Med. 363, 27 (December 2010), 2611--2620.Google ScholarGoogle ScholarCross RefCross Ref
  36. Elizabeth Kaziunas, Mark S. Ackerman, and Tiffany C.E. Veinot. 2013. Localizing chronic disease management: Information work and health translations. Proc. Am. Soc. Inf. Sci. Technol. 50, 1 (2013), 1--10. Google ScholarGoogle ScholarDigital LibraryDigital Library
  37. Murray Krahn. 2010. 'New' Evidence for Clinical Practice Guidelines. Patient Patient-Centered Outcomes Res. 3, 2 (June 2010), 71--77.Google ScholarGoogle Scholar
  38. Christopher A Le Dantec, Erika Shehan Poole, and Susan P Wyche. 2009. Values as lived experience: evolving value sensitive design in support of value discovery. In Proceedings of the 27th international conference on Human factors in computing systems. Google ScholarGoogle ScholarDigital LibraryDigital Library
  39. Jane Li, Leila Alem, Marlien Varnfield, and Branko Celler. 2014. A study on the implementation of large-scale home telemonitoring service. In Proceedings of the companion publication of the 17th ACM conference on Computer supported cooperative work & social computing - CSCW Companion '14. Google ScholarGoogle ScholarDigital LibraryDigital Library
  40. Catherine Lim, Andrew BL Berry, Tad Hirsch, Andrea Hartzler, Edward H Wagner, Evette Ludman, and James D Ralston. 2016. "It just seems outside my health:" How Patients with Chronic Conditions Perceive Communication Boundaries with Providers. In ACM Conference on Designing Interactive Systems. Google ScholarGoogle ScholarDigital LibraryDigital Library
  41. Catherine Y. Lim, Andrew B. L. Berry, Tad Hirsch, Andrea L. Hartzler, Edward H. Wagner, Evette J. Ludman, and James D. Ralston. 2017. Understanding What Is Most Important to Individuals with Multiple Chronic Conditions: A Qualitative Study of Patients' Perspectives. J. Gen. Intern. Med. (August 2017).Google ScholarGoogle ScholarCross RefCross Ref
  42. Courtney R. Lyles, Andrea Altschuler, Neetu Chawla, Christine Kowalski, Deanna McQuillan, Elizabeth Bayliss, Michele Heisler, and Richard W. Grant. 2016. User-Centered Design of a Tablet Waiting Room Tool for Complex Patients to Prioritize Discussion Topics for Primary Care Visits. JMIR MHealth UHealth 4, 3 (September 2016), e108.Google ScholarGoogle ScholarCross RefCross Ref
  43. Annemarie Mol. 2008. The logic of care: Health and the problem of patient choice. Routledge.Google ScholarGoogle Scholar
  44. Mary Ann Murray, Janice Bissonnette, Jennifer Kryworuchko, Wendy Gifford, and Sharon Calverley. 2013. Whose choice is it? Shared decision making in nephrology care. In Seminars in dialysis, 169--174.Google ScholarGoogle Scholar
  45. Aanand D. Naik, Lindsey A. Martin, Jennifer Moye, and Michele J. Karel. 2016. Health Values and Treatment Goals of Older, Multimorbid Adults Facing Life-Threatening Illness. J. Am. Geriatr. Soc. 64, 3 (March 2016), 625--631.Google ScholarGoogle ScholarCross RefCross Ref
  46. Aisling Ann O'Kane and Helena Mentis. 2012. Sharing medical data vs. health knowledge in chronic illness care. In Proceedings of the 2012 ACM annual conference extended abstracts on Human Factors in Computing Systems Extended Abstracts - CHI EA '12. Google ScholarGoogle ScholarDigital LibraryDigital Library
  47. Carolyn E Pang, Carman Neustaedter, Bernhard E Riecke, Erick Oduor, and Serena Hillman. 2013. Technology preferences and routines for sharing health information during the treatment of a chronic illness. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, 1759--1768. Google ScholarGoogle ScholarDigital LibraryDigital Library
  48. Michael Quinn Patton. 1999. Enhancing the quality and credibility of qualitative analysis. Health Serv. Res. 34, 5 Pt 2 (1999), 1189.Google ScholarGoogle Scholar
  49. Jeannette Pols. 2012. Care at a distance: on the closeness of technology. Amsterdam University Press.Google ScholarGoogle Scholar
  50. Nancy E Schoenberg, Corinne Leach, and William Edwards. 2009. "It's a toss up between my hearing, my heart, and my hip": Prioritizing and Accommodating Multiple Morbidities by Vulnerable Older Adults. J. Health Care Poor Underserved 20, 1 (2009), 134--151.Google ScholarGoogle ScholarCross RefCross Ref
  51. Thomas O. Staiger, Jeffrey G. Jarvik, Richard A. Deyo, Brook Martin, and Clarence H. Braddock. 2005. Brief report: Patient-physician agreement as a predictor of outcomes. J. Gen. Intern. Med. 20, 10 (October 2005), 935--937.Google ScholarGoogle ScholarCross RefCross Ref
  52. Si Sun, Xiaomu Zhou, Joshua C. Denny, Trent S. Rosenbloom, and Hua Xu. 2013. Messaging to your doctors. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. Google ScholarGoogle ScholarDigital LibraryDigital Library
  53. Andrea Taylor, Jeni Lennox, Alasdair Mort, David Heaney, Sarah-Anne Muñoz, Margaret Currie, Gill Hubbard, Kenny Steele, and Jeremy Keen. 2013. Developing hospice care over a distance in highland Scotland. In CHI '13 Extended Abstracts on Human Factors in Computing Systems on - CHI EA '13. Google ScholarGoogle ScholarDigital LibraryDigital Library
  54. S Kay Toombs. 1993. The Meaning of Illness: A Phenomenological Account of the Different Perspectives of Physician and Patient. Springer Science & Business Media.Google ScholarGoogle Scholar
  55. Kenton T Unruh, Meredith Skeels, Andrea Civan-Hartzler, and Wanda Pratt. 2010. Transforming clinic environments into information workspaces for patients. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, 183--192. Google ScholarGoogle ScholarDigital LibraryDigital Library
  56. Isabel Voigt, Jennifer Wrede, Heike Diederichs-Egidi, Marie-Luise Dierks, and Ulrike Junius-Walker. 2010. Priority setting in general practice: health priorities of older patients differ from treatment priorities of their physicians. Croat. Med. J. 51, 6 (2010), 483--492.Google ScholarGoogle ScholarCross RefCross Ref
  57. Ana-Maria Vranceanu, Cynthia Cooper, and David Ring. 2009. Integrating Patient Values into Evidence-Based Practice: Effective Communication for Shared Decision-Making. Hand Clin. 25, 1 (2009), 83--96.Google ScholarGoogle Scholar
  58. Carlos O Weiss, Cynthia M Boyd, Qilu Yu, Jennifer L Wolff, and Bruce Leff. 2007. Patterns of Prevalent Major Chronic Disease Among Older Adults in the United States. J. Am. Med. Assoc. 298, 10 (September 2007), 1160--1162.Google ScholarGoogle ScholarCross RefCross Ref
  59. Lauren Wilcox, Rupa Patel, Yunan Chen, and Aviv Shachak. 2013. Human factors in computing systems: Focus on patient-centered health communication at the ACM SIGCHI conference. Patient Educ. Couns. 93, 3 (December 2013), 532--534.Google ScholarGoogle ScholarCross RefCross Ref
  60. Holly O Witteman, Laura D Scherer, Teresa Gavaruzzi, Arwen H Pieterse, Andrea Fuhrel-Forbis, Selma Chipenda Dansokho, Nicole Exe, Valerie C Kahn, Deb Feldman-Stewart, Nananda F Col, Turgeon, Alexis F, and Fagerlin, Angela. 2016. Design Features of Explicit Values Clarification Methods A Systematic Review. Med. Decis. Making 36, 4 (2016), 453--471.Google ScholarGoogle ScholarCross RefCross Ref
  61. Donna M. Zulman, Eve A. Kerr, Timothy P. Hofer, Michele Heisler, and Brian J. Zikmund-Fisher. 2010. Patient-Provider Concordance in the Prioritization of Health Conditions Among Hypertensive Diabetes Patients. J. Gen. Intern. Med. 25, 5 (February 2010), 408--414.Google ScholarGoogle ScholarCross RefCross Ref
  62. 2012. Guiding Principles for the Care of Older Adults with Multimorbidity: An Approach for Clinicians. J. Am. Geriatr. Soc. 60, 10 (September 2012), E1--E25.Google ScholarGoogle Scholar

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