Engaging patients and consumers in research evidence: Applying the conceptual model of patient and family engagement

Patient Education and Counseling

Volumn 100, Issue 1, 2017, Pages 25-29

  Carman, Kristin L ^a   Workman, Thomas A ^a  

^a AMERICAN INSTITUTES FOR RESEARCH   (United States)

Author keywords

Engaged research; Medical decision making; Patient and family engagement; Patient partnership; Research evidence

Indexed keywords

ACCOUNTABILITY; ARTICLE; CLINICAL DECISION MAKING; CONCEPTUAL FRAMEWORK; CONSUMER ATTITUDE; EVIDENCE BASED MEDICINE; FAMILY ENGAGEMENT; FAMILY RELATION; HEALTH CARE PERSONNEL; HEALTH CARE PLANNING; HEALTH CARE QUALITY; HOSPITAL DESIGN; HUMAN; HUMAN RELATION; INFORMATION DISSEMINATION; MEDICAL RESEARCH; PATIENT CARE; PATIENT ENGAGEMENT; PATIENT SAFETY; PRIORITY JOURNAL; RESPONSIBILITY; SOCIAL BEHAVIOR; STRATEGIC PLANNING; TRANSPARENCY; WORK CAPACITY; COMMUNITY PARTICIPATION; DECISION MAKING; FAMILY; HEALTH SERVICES RESEARCH; ORGANIZATION AND MANAGEMENT; PATIENT PARTICIPATION; PROCEDURES; PSYCHOLOGY; THEORETICAL MODEL;

COMMUNITY PARTICIPATION; DECISION MAKING; EVIDENCE-BASED MEDICINE; FAMILY; HEALTH PERSONNEL; HEALTH SERVICES RESEARCH; HUMANS; MODELS, THEORETICAL; PATIENT PARTICIPATION; PATIENT-CENTERED CARE; PROFESSIONAL-FAMILY RELATIONS;

EID: 84997418982     PISSN: 07383991     EISSN: 18735134     Source Type: Journal    
DOI: 10.1016/j.pec.2016.07.009     Document Type: Article

References (29)

1. [1] Carman, K.L., Dardess, P., Maurer, M., Sofaer, S., Adams, K., Bechtel, C., et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff. (Project Hope) 32 (2013), 223–231.
2. [2] Shortell, S.M., Sehgal, N.J., Bibi, S., Ramsay, P.P., Neuhauser, L., Colla, C.H., et al. An early assessment of accountable care organizations' efforts to engage patients and their families. Med. Care Res. Rev. 72 (2015), 580–604.
3. [3] Hartzler, A., McCarty, C.A., Rasmussen, L.V., Williams, M.S., Brilliant, M., Bowton, E.A., et al. Stakeholder engagement: a key component of integrating genomic information into electronic health records. Genet. Med. 15 (2013), 792–801.
4. [4] Quality AfHRa. Guide to Patient and Family Engagement in Hospital Quality and Safety. Rockville, MD2013.
5. [5] K.L. Carman, P. Dardess, M.E. Maurer, T. Workman, D. Ganachari, E. Pathak-Sen. A Roadmap for Patient and Family Engagement in Healthcare Practice and Research. Palo Alto, CA2014. p. Prepared by the American Institutes for Research under a grant from the Gordon and Betty Moore Foundation, Dominick Frosch, Project Officer and Fellow; Susan Baade, Program Officer.
6. [6] Maurer, M., Dardess, P., Carman, K.L., Frazier, K., Smeeding, L., Guide to Patient and Family Engagement: Environmental Scan Report., 2012, Agency for Healthcare Research and Quality: American Institutes for Research.
7. [7] Vidyanti, I., Wu, B., Wu, S., Low-income minority patient engagement with automated telephonic depression assessment and impact on health outcomes. Qual. Life Res. 24 (2015), 1119–1129.
8. [8] Fishbane, S., Hazzan, A.D., Halinski, C., Mathew, A.T., Challenges and opportunities in late-stage chronic kidney disease. Clin. Kidney J. 8 (2015), 54–60.
9. [9] Carman, K., Maurer, M., Mallery, C., Wang, G., Garfinkel, S., Richmond, J., et al. Community Forum Deliberative Methods Demonstration: Evaluating Effectiveness and Eliciting Public Views on Use of Evidence. 2013, Rockville, MD: Agency for Healthcare Research and Quality.
10. [10] Institute PCOR. Listening to Patients, Caregivers, and Clinicians: Meeting Stakeholder Needs for Comparative Effectiveness Research—A PCORI Survey. Washington DC2015.
11. [11] Selby, J., Lipstein, S., PCORI at 3 years—progress lessons, and plans. N. Engl. J. Med. 2014 (2014), 592–595.
12. [12] Hunter, N., Califf, R., Fda Announces First-ever Patient Engagement Advisory Committee. Fda Voice. 2015, Silver Spring Md: United States Food and Drug Administration.
13. [13] Workman, T., Engaging Patients in Information Sharing and Data Collection: The Role of Patient-powered Registries and Research Networks Community Forum. 2013, Rockville, MD: Agency for Healthcare Research and Quality.
14. [14] Sox, H., Greenfield, S., Comparative effectiveness research: a report from the Institutes of Medicine. Ann. Intern. Med. 151 (2009), 203–205.
15. [15] Mullins, C., Abdulhalim, A., Lavallee, D., Continuous patient engagement in comparative effectiveness research. J. Am. Med. Assoc. 307 (2012), 1587–1588.
16. [16] Concannon, T.W., Fuster, M., Saunders, T., Patel, K., Wong, J.B., Leslie, L.K., et al. A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. J. Gen. Intern. Med. 29 (2014), 1692–1701.
17. [17] Forsythe, L.P., Ellis, L.E., Edmundson, L., Sabharwal, R., Rein, A., Konopka, K., et al. Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learned. J. Gen. Intern. Med. 30 (2015), 1–9.
18. [18] Domecq, J.P., Prutsky, G., Elraiyah, T., Wang, Z., Nabhan, M., Shippee, N., et al. Patient engagement in research: a systematic review. BMC Health Serv. Res., 14, 2014, 89.
19. [19] Esmail, L., Moore, E., Rein, A., Evaluating patient and stakeholder engagement in research: moving from theory to practice. J. Comp. Eff. Res. 4 (2015), 133–145.
20. [20] Agoritsas, T., Heen, A.F., Brandt, L., Alonso-Coello, P., Kristiansen, A., Akl, E.A., et al. Decision aids that really promote shared decision making: the pace quickens. Brit Med J., xx, 2015, 350.
21. [21] Elwyn, G., Legare, F., van der Weijden, T., Edwards, A., May, C., Arduous implementation: does the normalisation process model explain why it's so difficult to embed decision support technologies for patients in routine clinical practice. Implementation Sci., 3, 2008, 57.
22. [22] Sittig, D.F., Wright, A., Osheroff, J.A., Middleton, B., Teich, J.M., Ash, J.S., et al. Grand challenges in clinical decision support. J. Biomed. Inf. 41 (2008), 387–392.
23. [23] Morrison, C., Dearden, A., Beyond tokenistic participation: using representational artefacts to enable meaningful public participation in health service design. Health Policy 112 (2013), 179–186.
24. [24] Hibbard, J.H., Stockard, J., Mahoney, E.R., Tusler, M., Development of the patient activation measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Ser. Res. 39 (2004), 1005–1026.
25. [25] Fox, S., Raine, L., The Web at 25 in the U.S The Web at 25. 2014, The Pew Research Center, Washington, D.C.
26. [26] Hart, M., Greater Patient Access to Fed-funded Scientific Research? Coming in 2015. 2015, RAREDaily: Global Genes.
27. [27] Yakoot, M., Vitamin E and omega-3: what to believe: observational studies or randomized controlled trials. Heart Views 13 (2012), 66–68.
28. [28] Carman, K.L., Maurer, M., Mangrum, R., Yang, M., Ginsburg, M., Sofaer, S., et al. Understanding an informed public's views on the role of evidence in making health care decisions. Health Aff. (Project Hope) 35 (2016), 566–574.
29. [29] Stakeholder needs for comparative effectiveness research: the researcher's role. Patient Centered Outcomes Research Institute; 2015.