Balancing digital information-sharing and patient privacy when engaging families in the intensive care unit

Journal of the American Medical Informatics Association

Volumn 23, Issue 5, 2016, Pages 995-1000

  Brown, Samuel M ^a,l   Aboumatar, Hanan J ^b   Francis, Leslie ^c   Halamka, John ^d   Rozenblum, Ronen ^e   Rubin, Eileen ^f   Sarnoff Lee, Barbara ^d   Sugarman, Jeremy ^b,g,h   Turner, Kathleen ⁱ   Vorwaller, Micah ^c   Frosch, Dominick L ^j,k  

^a INTERMOUNTAIN HEALTHCARE   (United States)

^b JOHNS HOPKINS BLOOMBERG SCHOOL OF PUBLIC HEALTH   (United States)

^c UNIVERSITY OF UTAH   (United States)

^d BETH ISRAEL DEACONESS MEDICAL CENTER   (United States)

^e BRIGHAM AND WOMEN S HOSPITAL   (United States)

^f ARDS Foundation   (United States)

^g JOHNS HOPKINS UNIVERSITY   (United States)

^h JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE   (United States)

ⁱ UNIVERSITY OF CALIFORNIA   (United States)

^j GORDON AND BETTY MOORE FOUNDATION   (United States)

^k UNIVERSITY OF CALIFORNIA   (United States)

^l UNIVERSITY OF UTAH SCHOOL OF MEDICINE   (United States)

more..

Author keywords

Access; Digital information; Ethics; Intensive care unit; Patient engagement; Patient privacy; Patient centered care; Personal health records; Shared decision making

Indexed keywords

DOCTOR PATIENT RELATION; ELECTRONIC PATIENT RECORD; ETHICS; FAMILY STUDY; HUMAN; IDENTITY; INTENSIVE CARE UNIT; MEDICAL INFORMATION; MORALITY; PATIENT CARE; PATIENT PREFERENCE; PRIVACY; SHARED DECISION MAKING; CONFIDENTIALITY; DECISION MAKING; FAMILY; HUMAN RELATION; INFORMATION DISSEMINATION; PROXY;

CONFIDENTIALITY; DECISION MAKING; FAMILY; HUMANS; INFORMATION DISSEMINATION; INTENSIVE CARE UNITS; PATIENT PREFERENCE; PROFESSIONAL-FAMILY RELATIONS; PROXY;

EID: 84995802339     PISSN: 10675027     EISSN: 1527974X     Source Type: Journal    
DOI: 10.1093/jamia/ocv182     Document Type: Article

References (72)

1. Brown SM, Rozenblum R, Aboumatar H, et al. Defining patient and family engagement in the intensive care unit. Am J Respir Crit Care Med. 2015;191(3):358-360.
2. Zimmerman JE, Kramer AA, Knaus WA. Changes in hospital mortality for United States intensive care unit admissions from 1988 to 2012. Crit Care. 2013;17(2):R81.
3. Halpern NA, Pastores SM. Critical care medicine in the United States 2000-2005: an analysis of bed numbers, occupancy rates, payer mix, and costs. Crit Care Med. 2010;38(1):65-71.
4. Cooper LM, Linde-Zwirble WT. Medicare intensive care unit use: analysis of incidence, cost, and payment. Crit Care Med. 2004;32(11):2247-2253.
5. Mullins PM, Goyal M, Pines JM. National growth in intensive care unit admissions from emergency departments in the United States from 2002 to 2009. Acad Emerg Med. 2013;20(5):479-486.
6. Needham DM, Davidson J, Cohen H, et al. Improving long-term outcomes after discharge from intensive care unit: report from a stakeholders' conference. Crit Care Med. 2012;40(2):502-509.
7. Kahn JM, Le T, Angus DC, et al. The epidemiology of chronic critical illness in the United States*. Crit Care Med. 2015;43(2):282-287.
8. Angus DC, Barnato AE, Linde-Zwirble WT, et al. Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med. 2004;32(3):638-643.
9. Winters BD, Eberlein M, Leung J, Needham DM, Pronovost PJ, Sevransky JE. Long-term mortality and quality of life in sepsis: a systematic review. Crit Care Med. 2010;38(5):1276-1283.
10. Desai SV, Law TJ, Needham DM. Long-term complications of critical care. Crit Care Med. 2011;39(2):371-379.
11. Rabow MW, Hauser JM, Adams J. Supporting family caregivers at the end of life: "they don't know what they don't know". JAMA. 2004;291(4):483-491.
12. Davydow DS, Gifford JM, Desai SV, Needham DM, Bienvenu OJ. Posttraumatic stress disorder in general intensive care unit survivors: a systematic review. Gen Hosp Psychiatry. 2008;30(5):421-434.
13. Hartmann M, Bazner E, Wild B, Eisler I, Herzog W. Effects of interventions involving the family in the treatment of adult patients with chronic physical diseases: a meta-analysis. Psychother Psychosom. 2010;79(3):136-148.
14. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336-346.
15. Cassell EJ, Leon AC, Kaufman SG. Preliminary evidence of impaired thinking in sick patients. Ann Intern Med. 2001;134(12):1120-1123.
16. Im K, Belle SH, Schulz R, Mendelsohn AB, Chelluri L. Prevalence and outcomes of caregiving after prolonged (> or =48 hours) mechanical ventilation in the ICU. Chest. 2004;125(2):597-606.
17. Davidson JE. Facilitated sensemaking: a strategy and new middle-range theory to support families of intensive care unit patients. Crit Care Nurse. 2010;30(6):28-39.
18. Davidson JE, Daly BJ, Agan D, Brady NR, Higgins PA. Facilitated sensemaking: a feasibility study for the provision of a family support program in the intensive care unit. Crit Care Nurs Q. 2010;33(2):177-189.
19. Berger Z, Flickinger TE, Pfoh E, Martinez KA, Dy SM. Promoting engagement by patients and families to reduce adverse events in acute care settings: a systematic review. BMJ Qual Safety. 2014;23:548-555.
20. National Research Council. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: The National Academies Press; 2001.
21. Carman KL, Dardess P, Maurer M, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff. 2013;32(2):223-231.
22. Department of Health. Helping the NHS Put Patients at the Heart of Care: The Patient and Public Engagement Support Programme 2009-2010. London: Department of Health; 2009.
23. Chewning B, Bylund CL, Shah B, Arora NK, Gueguen JA, Makoul G. Patient preferences for shared decisions: a systematic review. Patient Educ Couns. 2012;86(1):9-18.
24. Davidson JE, Powers K, Hedayat KM, et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med. 2007;35(2):605-622.
25. Cox CE, Lewis CL, Hanson LC, et al. Development and pilot testing of a decision aid for surrogates of patients with prolonged mechanical ventilation. Crit Care Med. 2012;40(8):2327-2334.
26. Cox CE, White DB, Abernethy AP. A universal decision support system. Addressing the decision-making needs of patients, families, and clinicians in the setting of critical illness. Am J Respir Crit Care Med. 2014;190(4):366-373.
27. Delbanco T, Walker J, Bell SK, et al. Inviting patients to read their doctors' notes: a quasi-experimental study and a look ahead. Ann Intern Med. 2012;157(7):461-470.
28. Rozenblum R, Miller P, Pearson D, Marielli A. Patient-centered healthcare, patient engagement and health information technology: the perfect storm. In: Grando MA, Rozenblum R, Bates DW, eds. Information Technology for Patient Empowerment in Healthcare. Berlin: Walter de Gruyter; 2015:3-22.
29. Wells S, Rozenblum R, Park A, Dunn M, Bates DW. Personal health records for patients with chronic disease: a major opportunity. Appl Clin Inform. 2014;5(2):416-429.
30. Wells S, Rozenblum R, Park A, Dunn M, Bates DW. Organizational strategies for promoting patient and provider uptake of personal health records. J Am Med Inform Assoc. 2015;22(1):213-222.
31. Francis LP. Skeletons in the family medical closet: access of personal representatives to interoperable medical records. Louis UJ Health L & Pol'y. 2010;4:371.
32. Buschel I, Mehdi R, Cammilleri A, Marzouki Y, Elger B. Protecting human health and security in digital Europe: how to deal with the "privacy paradox"? Sci Eng Ethics. 2014;20(3):639-658.
33. Azoulay E, Pochard F, Chevret S, et al. Meeting the needs of intensive care unit patient families: a multicenter study. Am J Respir Crit Care Med. 2001;163(1):135-139.
34. Webster P, Johnson B. Developing and Sustaining a Patient and Family Advisory Council. Bethesda, MD: Institute for Family-Centered Care; 2000.
35. Pronovost PJ, Bo-Linn GW. Preventing patient harms through systems of care. JAMA. 2012;308(8):769-770.
36. Pronovost PJ, Bo-Linn GW, Sapirstein A. From heroism to safe design: leveraging technology. Anesthesiology. 2014;120(3):526-529.
37. Puchalski CM, Zhong Z, Jacobs MM, et al. Patients who want their family and physician to make resuscitation decisions for them: observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project. J Am Geriatr Soc. 2000;48(5 Suppl):S84-S90.
38. White DB, Braddock CH 3rd, Bereknyei S, Curtis JR. Toward shared decision making at the end of life in intensive care units: opportunities for improvement. Arch Intern Med. 2007;167(5):461-467.
39. Aboumatar H, Forbes L, Branyon E, et al. Understanding treatment with respect and dignity in the intensive care unit. Narrat Inq Bioeth. 2015;5(1A):55A-67A.
40. Geller G, Branyon E, Forbes L, et al. Health care professionals' perceptions and experiences of respect and dignity in the intensive care unit. Narrat Inq Bioeth. 2015;5(1A):27A-42A.
41. Beach MC, Forbes L, Branyon E, et al. Patient and family perspectives on respect and dignity in the intensive care unit. Narrat Inq Bioeth. 2015;5(1A):15A-25A.
42. Mehlhorn J, Freytag A, Schmidt K, et al. Rehabilitation interventions for postintensive care syndrome: a systematic review. Crit Care Med. 2014;42(5):1263-1271.
43. Jones C, Backman C, Capuzzo M, et al. Intensive care diaries reduce new onset post traumatic stress disorder following critical illness: a randomised, controlled trial. Crit Care. 2010;14(5):R168.
44. Brown S, Bell S, Roche S, et al. Design of a communication portal in the intensive care unit: surveys of current and potential stakeholders. Am J Respir Crit Care Med. 2015.
45. Anderson IK. The uses and gratifications of online care pages: a study of CaringBridge. Health Commun. 2011;26(6):546-559.
46. Nazi KM, Turvey CL, Klein DM, Hogan TP, Woods SS. VA OpenNotes: exploring the experiences of early patient adopters with access to clinical notes. J Am Med Inform Assoc. 2015;22(2):380-389.
47. Bruno MA, Petscavage-Thomas JM, Mohr MJ, Bell SK, Brown SD. The "open letter": radiologists' reports in the era of patient web portals. J Am Coll Radiol. 2014;11(9):863-867.
48. Johnson AJ, Easterling D, Nelson R, Chen MY, Frankel RM. Access to radiologic reports via a patient portal: clinical simulations to investigate patient preferences. J Am Coll Radiol. 2012;9(4):256-263.
49. Johnson AJ, Frankel RM, Williams LS, Glover S, Easterling D. Patient access to radiology reports: what do physicians think? J Am Coll Radiol. 2010;7(4):281-289.
50. Petersen GS, Knudsen JL, Vinter MM. Cancer patients' preferences of care within hospitals: a systematic literature review. Int J Qual Health Care. 2015.
51. Cassileth BR, Zupkis RV, Sutton-Smith K, March V. Information and participation preferences among cancer patients. Ann Intern Med. 1980;92(6):832-836.
52. Nease RF Jr, Brooks WB. Patient desire for information and decision making in health care decisions: the Autonomy Preference Index and the Health Opinion Survey. J Gen Intern Med. 1995;10(11):593-600.
53. Chan KK, Paterson-Brown S. How do fathers feel after accompanying their partners in labour and delivery? J Obstet Gynaecol. 2002;22(1):11-15.
54. Steen M, Downe S, Bamford N, Edozien L. Not-patient and not-visitor: a metasynthesis fathers' encounters with pregnancy, birth and maternity care. Midwifery. 2012;28(4):362-371.
55. Genesoni L, Tallandini MA. Men's psychological transition to fatherhood: an analysis of the literature, 1989-2008. Birth. 2009;36(4):305-318.
56. Jones BL, Contro N, Koch KD. The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring. Pediatrics. 2014;133(Suppl 1):S8-S15.
57. Penson RT, Green KM, Chabner BA, Lynch TJ Jr. When does the responsibility of our care end: bereavement. Oncologist. 2002;7(3):251-258.
58. Back AL, Young JP, McCown E, et al. Abandonment at the end of life from patient, caregiver, nurse, and physician perspectives: loss of continuity and lack of closure. Arch Intern Med. 2009;169(5):474-479.
59. Nelson JL. Families and bioethics: old problems, new themes. J Clin Ethics. 2005;16(4):299-302.
60. Nelson JL. Just expectations: Family caregivers, practical identities and social justice in the provision of health care. Hippocrates' Maze: Ethical Explorations of the Medical Labyrinth. Lanham, MD: Rowman and Littlefield; 2003:53-69.
61. Hardwig J. What about the family? Hastings Cent Rep. 1990;20(2):5-10.
62. Hardwig J. Is there a duty to die? Hastings Cent Rep. 1997;27(2):34-42.
63. Lynn J, Harrell F Jr, Cohn F, Wagner D, Connors AF Jr. Prognoses of seriously ill hospitalized patients on the days before death: implications for patient care and public policy. New Horiz. 1997;5(1):56-61.
64. Zulman DM, Nazi KM, Turvey CL, Wagner TH, Woods SS, An LC. Patient interest in sharing personal health record information: a web-based survey. Ann Intern Med. 2011;155(12):805-810.
65. Jackson SL, Mejilla R, Darer JD, et al. Patients who share transparent visit notes with others: characteristics, risks, and benefits. J Med Internet Res. 2014;16(11):e247.
66. Stepanikova I. Racial-ethnic biases, time pressure, and medical decisions. J Health Soc Behav. 2012;53(3):329-343.
67. Oliver MN, Wells KM, Joy-Gaba JA, Hawkins CB, Nosek BA. Do physicians' implicit views of African Americans affect clinical decision making? J Am Board Fam Med. 2014;27(2):177-188.
68. Chapman EN, Kaatz A, Carnes M. Physicians and implicit bias: how doctors may unwittingly perpetuate health care disparities. J Gen Intern Med. 2013;28(11):1504-1510.
69. Nelson AR, Smedley BD, Stith AY. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (with CD). Washington, DC: National Academies Press; 2009.
70. Guilfoyle J, Kelly L, St Pierre-Hansen N. Prejudice in medicine: our role in creating health care disparities. Can Fam Physician. 2008;54(11):1511-1513, 8-20.
71. Hiltzik M. Anthem is warning consumers about its huge data breach. Here's a translation. Los Angeles Times March 6, 2015 [cited May 6, 2015]. http://www.latimes.com/business/hiltzik/la-fi-mh-anthem-is-warning-consumers-20150306-column.html-page=1. Accessed January 5, 2016.
72. Hennessy-Fiske M. UCLA Hospitals to Pay $865,500 for Breaches of Celebrities' Privacy. Los Angeles Times. 2011;7(08). http://articles.latimes.com/2011/jul/08/local/la-me-celebrity-snooping-20110708. Accessed January 5, 2016