Top

Published in:

2019 | OriginalPaper | Chapter

5. Patient and Family Engagement in the United States: A Social Movement from Patient to Advocate to Partner

Authors : Maureen Maurer, Pam Dardess, Tara Bristol Rouse

Published in: Patient Engagement

Publisher: Springer International Publishing

Activate our intelligent search to find suitable subject content or patents.

search-config

AI-assisted search

Off

Abstract

Today’s focus on patient and family engagement in the United States results from nearly seven decades of evolving changes in the culture and practice of health care, creating opportunities for patients, families, caregivers, and community members to partner in decisions about health care and its delivery. The shift from patients as passive recipients of care to advocates to partners reflects multiple areas of influence: changing the traditional patient-provider dynamic, recognizing the power of patients as healthcare consumers, ePatients advocating for collective change, and partnerships in the patient- and family-centered care and patient safety movements. Advancing the practice and science of engagement requires system-level incentives and support, intentional efforts to engage patients and families from diverse backgrounds, and stronger evidence to improve uptake of engagement practices.

Dont have a licence yet? Then find out more about our products and how to get one now:

Springer Professional "Wirtschaft+Technik"

Online-Abonnement

Mit Springer Professional "Wirtschaft+Technik" erhalten Sie Zugriff auf:

über 102.000 Bücher
über 537 Zeitschriften

aus folgenden Fachgebieten:

Automobil + Motoren
Bauwesen + Immobilien
Business IT + Informatik
Elektrotechnik + Elektronik
Energie + Nachhaltigkeit
Finance + Banking
Management + Führung
Marketing + Vertrieb
Maschinenbau + Werkstoffe
Versicherung + Risiko

Jetzt Wissensvorsprung sichern!

inform now

Springer Professional "Wirtschaft"

Online-Abonnement

Mit Springer Professional "Wirtschaft" erhalten Sie Zugriff auf:

über 67.000 Bücher
über 340 Zeitschriften

aus folgenden Fachgebieten:

Bauwesen + Immobilien
Business IT + Informatik
Finance + Banking
Management + Führung
Marketing + Vertrieb
Versicherung + Risiko

Jetzt Wissensvorsprung sichern!

inform now

previous chapter Implementing Patient and Carer Participation in Self-Care and Co-Care in Sweden: Policy, Practice and the Future of Person-Centred Care

next chapter Connections: The Power of Learning Together to Improve Healthcare in the United Kingdom

ABIM Foundation. 2018. Choosing wisely: Our mission. http://www.choosingwisely.org/our-mission/. Accessed 21 Sept 2018.

AHA and Picker Institute. 1997. Eye on the patients: A report of the American Hospital Association and the Picker Institute. Washington, DC: Author.

AHRQ. 2016. CAHPS: Assessing health care quality from the patient’s perspective. Rockville, MD: Agency for Healthcare Research & Quality.

———. 2017. Guide to patient and family engagement in hospital quality and safety | agency for healthcare research & quality. Agency for Healthcare Research and Quality. https://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/index.html. Accessed 25 Sept 2018.

———. 2018a. Agency for healthcare research & quality: The CAHPS program. https://www.ahrq.gov/cahps/about-cahps/cahps-program/index.html. Accessed 14 Sept 2018.

———. 2018b. National healthcare quality & disparities report chartbooks. Rockville, MD: Agency for Healthcare Research and Quality.

AIR. 2017. PfP strategic vision roadmap for person and family engagement (PFE). Achieving the PFE metrics to improve patient safety and health equity. Centers for Medicare & Medicaid Services.

AMA. 2018. Patient rights | American medical association code of medical ethics. https://www.ama-assn.org/delivering-care/patient-rights. Accessed 21 Sept 2018.

Balint, M. 1955. The doctor, his patient, and the illness. Lancet 268 (6866): 683–688.CrossRef

Billings, J. 2004. Promoting the dissemination of decision aids: An odyssey in a dysfunctional health care financing system. Health Affairs (Millwood) 23 (Suppl): Variation:Var128–32. https://doi.org/10.1377/hlthaff.var.128.CrossRef

Bodenheimer, T., E.H. Wagner, and K. Grumbach. 2002. Improving primary care for patients with chronic illness. JAMA 288 (14): 1775–1779.CrossRef

Carman, K.L., M. Maurer, J.M. Yegian, P. Dardess, J. McGee, M. Evers, and K.O. Marlo. 2010. Evidence that consumers are skeptical about evidence-based health care. Health Affairs (Millwood) 29 (7): 1400–1406. https://doi.org/10.1377/hlthaff.2009.0296.CrossRef

Carman, K.L., P. Dardess, M. Maurer, S. Sofaer, K. Adams, C. Bechtel, and J. Sweeney. 2013. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Affairs (Millwood) 32 (2): 223–231. https://doi.org/10.1377/hlthaff.2012.1133.CrossRef

Carman, K.L., P. Dardess, M. Maurer, T. Workman, D. Ganachari, and E. Pathak-Sen. 2014. A roadmap for patient and family engagement in healthcare research and practice. Palo Alto, CA: Gordon and Betty Moore Foundation.

Catlin, A.C., and C.A. Cowan. 2015. History of health spending in the United States, 1960–2013. Retrieved from https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/NationalHealthExpendData/Downloads/HistoricalNHEPaper.pdf

Chamberlin, J. 1978. On our own: Patient-controlled alternatives to the mental health system. New York: Hawthorn Books.

CIA. 2018. World Factbook: United States. https://www.cia.gov/library/publications/the-world-factbook/docs/summary/US_general_one_pager.pdf. Accessed 13 Dec 2018.

Clayman, M.L., C.L. Bylund, B. Chewning, and G. Makoul. 2016. The impact of patient participation in health decisions within medical encounters: A systematic review. Medical Decision Making 36 (4): 427–452. https://doi.org/10.1177/0272989x15613530.CrossRef

CMS. 2015. CMS equity plan for medicare. Centers for Medicare & Medicaid Services Office of Minority Health. https://www.cms.gov/About-CMS/Agency-Information/OMH/equity-initiatives/equity-plan.html. Last Modified 15 Aug 2018 3:12 PM; Accessed 22 Sept 2018.

———. 2016. Centers for medicare & medicaid services person and family engagement strategy. Centers for Medicare & Medicaid Services. https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/QualityInitiativesGenInfo/Downloads/Person-and-Family-Engagement-Strategic-Plan-12-12-16.pdf. Accessed 22 Sept 2018.

———. 2018. Centers for medicare and medicaid services national health expenditures 2016 highlights. https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/NationalHealthExpendData/Downloads/highlights.pdf. Accessed 21 Sept 2018.

Conway, J.B., and S. Weingart. 2015. Organizational change in the face of highly public errors I. The Dana-Farber cancer institute experience. AHRQ Patient Safety Network. https://psnet.ahrq.gov/perspectives/perspective/3/organizational-change-in-the-face-of-highly-public-errorsi-the-dana-farber-cancer-institute-experience.

Cypress, B.S. 2012. Family presence on rounds: A systematic review of literature. Dimensions of Critical Care Nursing 31 (1): 53–64. https://doi.org/10.1097/DCC.0b013e31824246dd.CrossRef

Deber, R.B., N. Kraetschmer, S. Urowitz, and N. Sharpe. 2005. Patient, consumer, client, or customer: What do people want to be called? Health Expectations 8 (4): 345–351. https://doi.org/10.1111/j.1369-7625.2005.00352.x.CrossRef

deBronkart, Dave. 2018. About e-patient dave. @epatientdave. https://www.epatientdave.com/about-dave/. Accessed 21 Sept 2018.

Delbanco, T., J. Walker, S.K. Bell, J.D. Darer, J.G. Elmore, N. Farag, H.J. Feldman, R. Mejilla, L. Ngo, J.D. Ralston, S.E. Ross, N. Trivedi, E. Vodicka, and S.G. Leveille. 2012. Inviting patients to read their doctors’ notes: A quasi-experimental study and a look ahead. Annals of Internal Medicine 157 (7): 461–470. https://doi.org/10.7326/0003-4819-157-7-201210020-00002.CrossRef

Family Voices. 2018. Family voices. http://familyvoices.org/. Accessed 21 Sept 2018.

Fox, S., and M. Duggan. 2013. Peer-to-peer health care. http://www.pewinternet.org/2013/01/15/peer-to-peer-health-care/. Accessed 14 Sept 2018.

Greene, J., and J.H. Hibbard. 2012. Why does patient activation matter? An examination of the relationships between patient activation and health-related outcomes. Journal of General Internal Medicine 27 (5): 520–526. https://doi.org/10.1007/s11606-011-1931-2.CrossRef

Greene, J., and E. Peters. 2009. Medicaid consumers and informed decisionmaking. Health Care Financing Review 30 (3): 25–40.

Greene, J., J. Hibbard, R. Sacks, V. Overton, and C.D. Parrotta. 2015. When patient activation levels change, health outcomes and costs change, too. Health Affairs 34 (3): 431–437.CrossRef

Gruman, J., M.H. Rovner, M.E. French, D. Jeffress, S. Sofaer, D. Shaller, and D.J. Prager. 2010. From patient education to patient engagement: Implications for the field of patient education. Patient Education and Counseling 78 (3): 350–356. https://doi.org/10.1016/j.pec.2010.02.002.CrossRef

Hatlie, M. 2014. Consumers and the patient safety movement: Past and future, here and there. Lioneart Publishing, Inc. https://www.psqh.com/octdec04/consumers.html. Accessed 14 Sept 2018.

Hibbard, J.H., J. Stockard, E.R. Mahoney, and M. Tusler. 2004. Development of the Patient Activation Measure (PAM): Conceptualizing and measuring activation in patients and consumers. Health Services Research 39 (4 Pt 1): 1005–1026. https://doi.org/10.1111/j.1475-6773.2004.00269.x.CrossRef

Holliday, Regina. 2018. Regina Holliday’s medical advocacy blog. http://reginaholliday.blogspot.com/. Accessed 21 Sept 2018.

IOM. 1999. To err is human: Building a safer health system. Ed. L.T. Kohn, J.M. Corrigan, and M. Donaldson. Washington, DC: National Academy of Sciences.

———. 2001. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press.

———. 2003. The future of the public’s health in the 21st century. Washington, DC: The National Academies Press.

Johnson, B.H. 2000. Family-centered care: Four decades of progress. Families, Systems, & Health 18 (2): 137–156.CrossRef

Josie King Foundation. 2016. About Josie King Foundation. http://josieking.org/home/. Accessed 14 Sept 2018.

Ketelaar, N.A., M.J. Faber, S. Flottorp, L.H. Rygh, K.H. Deane, and M.P. Eccles. 2011. Public release of performance data in changing the behaviour of healthcare consumers, professionals or organisations. Cochrane Database of Systematic Reviews 11: Cd004538. https://doi.org/10.1002/14651858.CD004538.pub2.CrossRef

KFF. 2008. Kaiser Family Foundation 2008 update on consumers’ views of patient safety and quality information. https://www.kff.org/health-reform/poll-finding/2008-update-on-consumers-views-of-patient-2/. Accessed 14 Sept 2018.

Kochanek, Kenneth D., Sherry Murphy, Jiaquan X. Xu, and Elizabeth Arias Arias. 2017. Centers for disease control and prevention, mortality in the United States, 2016. https://www.cdc.gov/nchs/products/databriefs/db293.htm. Accessed 13 Dec 2018.

Kutner, M., E. Greenburg, Y. Jin, and C. Paulsen. 2006. The health literacy of America’s adults: Results from the 2003 National Assessment of Adult Literacy. Washington, DC: National Center for Education Statistics.

Levine, S. 2015. Patients as consumers: We are all patients and consumers. NEJM Catalyst. https://catalyst.nejm.org/we-are-all-patients-we-are-all-consumers/. Last Modified 28 Dec 2015; Accessed 14 Sept 2018.

Manahan, B. 2011. The whole systems medicine of tomorrow: A half-century perspective. Explore (NY) 7 (4): 212–214.CrossRef

Maurer, M.E., P. Dardess, D.L. Frosch, and K.L. Carman. 2015. Creating change in health care: Developing a shared understanding and roadmap for action. North Carolina Medical Journal 76 (3): 161–164. https://doi.org/10.18043/ncm.76.3.161.CrossRef

Maurer, M., K.L. Carman, M. Yang, K. Firminger, and J. Hibbard. 2017. Increasing the use of comparative quality information in maternity care: Results from a randomized controlled trial. Medical Care Research and Review: 1077558717712290. doi: https://doi.org/10.1177/1077558717712290.CrossRef

MedicineX. 2018. Medicine X 2018 ePatient scholarship program. https://medicinex.stanford.edu/2018-epatient-program/. Accessed 21 Sept 2018.

Moffatt-Bruce, S.D., F.D. Ferdinand, and J.I. Fann. 2016. Patient safety: Disclosure of medical errors and risk mitigation. The Annals of Thoracic Surgery 102 (2): 358–362. https://doi.org/10.1016/j.athoracsur.2016.06.033.CrossRef

Mothers Against Medical Errors. 2018. Mothers against medical errors: Supporting victims of medical harm. http://www.mamemomsonline.org/. Accessed 14 Sept 2018.

National Academies of Sciences. 2017. Communities in action: Pathways to health equity. Ed. A. Baciu, Y. Negussie, A. Geller, and J.N. Weinstein. Washington, DC: National Academies Press.

NCIOM. 2015. Patient and family engagement: A partnership for culture change. A report of the NCIOM task force on patient and family engagement. Morrisville, NC: North Carolina Institute of Medicine.

Oldfield, B.J., M.A. Harrison, I. Genao, A.T. Greene, M.E. Pappas, J.G. Glover, and M.S. Rosenthal. 2018. Patient, family, and community advisory councils in health care and research: A systematic review. Journal of General Internal Medicine. https://doi.org/10.1007/s11606-018-4565-9.CrossRef

OpenNotes. 2018. Our history: Fifty years in the making. https://www.opennotes.org/history/. Accessed 21 Sept 2018.

Park, M., T.T. Giap, M. Lee, H. Jeong, M. Jeong, and Y. Go. 2018. Patient- and family-centered care interventions for improving the quality of health care: A review of systematic reviews. International Journal of Nursing Studies 87: 69–83. https://doi.org/10.1016/j.ijnurstu.2018.07.006.CrossRef

PCPCC. 2018. Patient-centered primary care collaborative: Improving care through partnership with patients, families & communities. https://www.pcpcc.org/tcpi. Accessed 14 Sept 2018.

Pinder, Jeanne. 2010. About—Clear health costs. https://clearhealthcosts.com/about/. Accessed 21 Sept 2018.

Planetree, Inc. 2018. History of planetree. https://planetree.org/reputation/. Accessed 14 Sept 2018.

President’sCommission. 1982. The president’s commission for the study of ethical problems in medicine and biomedical and behavioral research: A report on the ethical and legal implications of informed consent in the patient-practitioner relationship. Washington, DC.

Quincy, L. 2011. Making health insurance cost-sharing clear to consumers: Challenges in implementing health reform’s insurance disclosure requirements. Commonwealth Fund Issue Brief 2: 1–17.

Richmond, J., W. Powell, M. Maurer, R. Mangrum, M.R. Gold, E. Pathak-Sen, M. Yang, and K.L. Carman. 2017. Public mistrust of the U.S. health care system’s profit motives: Mixed-methods results from a randomized controlled trial. Journal of General Internal Medicine 32 (12): 1396–1402. https://doi.org/10.1007/s11606-017-4172-1.CrossRef

Sawesi, S., M. Rashrash, K. Phalakornkule, J.S. Carpenter, and J.F. Jones. 2016. The impact of information technology on patient engagement and health behavior change: A systematic review of the literature. JMIR Medical Informatics 4 (1): e1. https://doi.org/10.2196/medinform.4514.CrossRef

Sharma, A.E., M. Knox, L.E. Peterson, R. Willard-Grace, K. Grumbach, and M.B. Potter. 2018. How is family medicine engaging patients at the practice-level?: A national sample of family physicians. Journal of American Board of Family Medicine 31 (5): 733–742. https://doi.org/10.3122/jabfm.2018.05.170418.CrossRef

Sisk, B., R. Frankel, E. Kodish, and J. Harry Isaacson. 2016. The truth about truth-telling in American medicine: A brief history. The Permanente Journal 20 (3): 74–77. https://doi.org/10.7812/tpp/15-219.CrossRef

SPM. 2017a. About us | society for participatory medicine. https://participatorymedicine.org/epatients/about-e-patientsnet. Last Modified 11 Oct 2008; Accessed 21 Sept 2018.

———. 2017b. Society for participatory medicine founders circle. https://participatorymedicine.org/about/board-of-directors/founders-circle/. Last Modified 2 June 2010; Accessed 21 Sept 2018.

Sternberg, S. 2015. Desegregation: The hidden legacy of Medicare. US News & World Report. https://www.usnews.com/news/articles/2015/07/30/desegregation-the-hidden-legacy-of-medicare. Accessed 14 Sept 2018.

Tennyson, Sharon L. 2011. Consumers’ insurance literacy. In Networks Financial Institute Policy Brief No. 2011-PB-06: SSRN.

Tomes, N. 2006. The patient as a policy factor: A historical case study of the consumer/survivor movement in mental health. Health Affairs (Millwood) 25 (3): 720–729. https://doi.org/10.1377/hlthaff.25.3.720.CrossRef

Totten, A.M., J. Wagner, A. Tiwari, C. O’Haire, J. Griffin, and M. Walker. 2012. Closing the quality gap: Revisiting the state of the science (vol. 5: public reporting as a quality improvement strategy). Evidence Report/Technology Assessment (Full Report) 208 (5): 1–645.

Valor, E. 2018. About me—EricValor.org. @surfiving. http://www.ericvalor.org/about-me/. Accessed 14 Sept 2018.

Von Korff, M., J. Gruman, J. Schaefer, S.J. Curry, and E.H. Wagner. 1997. Collaborative management of chronic illness. Annals of Internal Medicine 127 (12): 1097–1102.CrossRef

Wachter, R., G.S. Kaplan, T. Gandhi, and L. Leape. 2015. You can’t understand something you hide: Transparency as a path to improve patient safety. Health Affairs Blog. https://www.healthaffairs.org/do/10.1377/hblog20150622.048711/full/.

Wells, N. 2011. Historical perspective on family-centered care. Academic Pediatrics 11 (2): 100–102. https://doi.org/10.1016/j.acap.2011.01.007.CrossRef

Will, J.F. 2011a. A brief historical and theoretical perspective on patient autonomy and medical decision making: Part I: The beneficence model. Chest 139 (3): 669–673. https://doi.org/10.1378/chest.10-2532.CrossRef

———. 2011b. A brief historical and theoretical perspective on patient autonomy and medical decision making: Part II: The autonomy model. Chest 139 (6): 1491–1497. https://doi.org/10.1378/chest.11-0516.CrossRef

Yegian, J.M., P. Dardess, M. Shannon, and K.L. Carman. 2013. Engaged patients will need comparative physician-level quality data and information about their out-of-pocket costs. Health Affairs (Millwood) 32 (2): 328–337. https://doi.org/10.1377/hlthaff.2012.1077.CrossRef

Yonas, M.A., N. Jones, E. Eng, A.I. Vines, R. Aronson, D.M. Griffith, B. White, and M. DuBose. 2006. The art and science of integrating Undoing Racism with CBPR: Challenges of pursuing NIH funding to investigate cancer care and racial equity. Journal of Urban Health 83 (6): 1004–1012. https://doi.org/10.1007/s11524-006-9114-x.CrossRef

Title: Patient and Family Engagement in the United States: A Social Movement from Patient to Advocate to Partner
Authors: Maureen Maurer
Pam Dardess
Tara Bristol Rouse
Publisher: Springer International Publishing
Book: Patient Engagement
Print ISBN: 978-3-030-14100-4

Electronic ISBN: 978-3-030-14101-1

Copyright Year: 2019
DOI: https://doi.org/10.1007/978-3-030-14101-1_5