A Reminder to Decision-Makers and Healthcare Professionals of the “Why” of Patient Engagement: Ethical Imperatives and Economic and Social Benefits
Events in recent months have shown us that certain healthcare professionals and patients can be excluded from important health system discussions and policy deliberations. Most notably, this was shown through the exclusion of both patients and primary care providers in the discussions surrounding the priorities for the Ontario healthcare system, which sparked resentment and discontentment across the country. This event casts a spotlight on an important feature of the patient engagement movement as we understand it today.
From my view, the exclusion of patients in important discussions regarding the organization and delivery of health systems may indicate that decision-makers have not internalized the value and benefits associated with engaging patients across the healthcare milieu. The example described previously of the Ontario healthcare system is not the exception, but one of many discussions around the world that seemingly exclude patients in important deliberations. These actions do not mean that patients are excluded across the healthcare system – many efforts within and across health facilities regularly solicit and integrate patient preferences. However, the exclusion of patients from jurisdictional decision-making is more pertinent because of the top-down influence of policies, laws, and regulations on practice, and the clandestine nature of policy deliberations that limits the extent to which patients and the public can determine how they have been excluded and for what reasons. Conversations surrounding patient engagement force us to consider what is missing in our philosophy of the healthcare system that tends to place patients on the periphery, instead of the focal point.
The discontentment that arose from such events prompted me to write this essay to reorient decision-makers and health system actors more broadly to the conceptual foundations of patient engagement and the myriad of benefits to patients, healthcare professionals, and the system that justifies patient engagement in all healthcare activities. In this essay, I will make two arguments that urge decision-makers across the country and around the world, to reconcile their actions that seemingly exclude patients in the discussions that matter the most and describe the premises that justify patients as a vital resource for healthcare systems. At the end of this essay, I also offer research on the impact of patient engagement.
1. Ethical Imperatives
Before discussing the benefits of patient engagement, it is helpful to describe the ethical imperatives that provide credence to the patient engagement movement. These ethical imperatives stem from a recognition that patients, including their family and care representatives, are members of the public, users of health services, and taxpayers of the healthcare system, and as such, have the democratic right to determine how health services are planned, organized, delivered, improved, and where the resources are allocated.
Not including patients in the policy processes conflicts with the notions of public participation. Capabilities describe what actions people are able to do, which is distinct from their actual actions. Scholars have asserted that policy formulation processes ought to be guided by the real and potential capabilities of individuals, and as such, leverage individuals as a resource for inclusive, holistic, and effective change. For the policy formulation process, this means that users of the healthcare system should be invited and welcomed into the discussions that determine the organization and delivery of the system. This views also promotes the agency and autonomy among patients, families, and care representatives in the healthcare system that promulgates patient partnerships in all healthcare activities. By engaging patients and their care representatives, it is hoped that the health service design and delivery are more aligned with the expectations, perspectives, and preferences of those whom the system is supposed to serve.
2. Individual/Group and Organizational Benefits
Having deeply immersed in the patient engagement literature, this essay cannot capture all of the plethora of benefits associated with patient engagement. I have attempted, however, to summarize the benefits from some of the most prominent studies (I have also provided a list of 10 research studies and reviews on the impact of patient engagement at the end of this essay).
Benefits exist at the individual/group and organization levels. Individual-level benefits include higher patient self-esteem, enhanced healthcare provider accountability in health service delivery, improved relationships between patients and healthcare, increased patient satisfaction with health services, and higher engagement in preventive and healthy behaviours.
Organization-level benefits include improved information tools and systems for patients, the simplification and streamlining of care pathways and management structures, more favourable staff attitudes towards patient engagement and patient-centred care, reduced hospital admissions, a more cost-effective and sustainable health facility, improved clinical outcomes of patients.
In the discussions advancing patient engagement in healthcare, researchers have focused on understanding the benefits associated with patient engagement, and as such there is less attention to the adverse outcomes associated with not engaging patients. These outcomes may include increased prevalence of preventable medical diseases, suboptimal health and well-being of populations, widening of existing health disparities between groups, and the squandering of limited healthcare resources.
Some scholars and managers have recognized the latent nature of quality improvement initiatives that have resulted in limited change, have a low potential for sustainability, and their transferability to other healthcare contexts is uncertain. Many quality improvement initiatives experience these difficulties because they may not recognize or integrate patients as partners to improving the health system. On this point, Patrick and colleagues (2018) asserted that if patients are not engaged as partners in healthcare system activities, then there is a risk that heavily constrained public resources are used to produce hospital strategic plans, services, and quality improvement initiatives that are not directly relevant to patients, and consequently poorly implemented in practice. Moreover, involving patients in healthcare activities and initiatives may provide valuable information previously unknown about how health services are organized and delivered, because they reveal issues that are not visible to medical staff.
In recent events, there has been the systematic exclusion of important voices in health system discussions, most notably patients and certain healthcare professionals. This realization indicates that decision-makers may have yet to internalize the plethora of benefits and ethical imperatives associated with patient engagement. In this essay, I have sought to reorient decision-makers and other health system actors to the reasons and rationale for engaging patients across the healthcare milieu. This essay serves as a reminder to healthcare professionals around the world that the integration of patients is an important resource missing in many healthcare activities. By inviting and welcoming patients, we may discover remarkable, ethical, and substantial solutions to the most burgeoning health system problems.
About the Author
Umair Majid, MSc, MEd, PhD (student), Institute of Health Policy, Management, and Evaluation, University of Toronto and University Health Network
Umair Majid completed his MSc in health research methodology at McMaster University where he investigated the quality appraisal process of qualitative research. Currently at McMaster, Umair holds appointments as a Curriculum Designer, Program Developer, and Instructor, teaching and designing courses on epidemiology, the Canadian healthcare system, and pathophysiology. Umair also has diverse experiences, knowledge and expertise in qualitative, quantitative, and mixed-methods research, which he uses to provide qualitative evidence to agencies investigating technologies to include under the provincial or national funding mandate. Umair also has a MEd from Queen's University where he examined innovative and effective ways to design and evaluate curricula and programs. Currently, Umair is a PhD student in Health Services Organization and Management Studies at the Institute of Health Policy, Management, and Evaluation at University of Toronto. For his PhD dissertation, Umair is investigating how to transform tokenism in patient engagement to partnership in hospital planning, delivery, and evaluation activities.
Research on Patient Engagement Impacts
1. Crawford MJ, Rutter D, Manley C, Weaver T, Bhui K, Fulop N, Tyrer P. Systematic review of involving patients in the planning and development of health care. Bmj. 2002 Nov 30;325(7375):1263.
2. Dudley L, Gamble C, Preston J, Buck D, Hanley B, Williamson P, Young B, EPIC Patient Advisory Group. What difference does patient and public involvement make and what are its pathways to impact? Qualitative study of patients and researchers from a cohort of randomised clinical trials. PloS one. 2015 Jun 8;10(6):e0128817.
3. Herrin J, Harris KG, Kenward K, Hines S, Joshi MS, Frosch DL. Patient and family engagement: a survey of US hospital practices. BMJ Qual Saf. 2015 Jun 16:bmjqs-2015.
4. Liang L, Cako A, Urquhart R, Straus SE, Wodchis WP, Baker GR, Gagliardi AR. Patient engagement in hospital health service planning and improvement: a scoping review. BMJ open. 2018 Jan 1;8(1):e018263.
5. Mcinerney P, Cooke R. Patients’ involvement in improvement initiatives: a qualitative systematic review. JBI database of systematic reviews and implementation reports. 2015 Oct 1;13(10):232-90.
6. Meterko M, Wright S, Lin H, Lowy E, Cleary PD. Mortality among patients with acute myocardial infarction: the influences of patient?centered care and evidence?based medicine. Health services research. 2010 Oct;45(5p1):1188-204.
7. Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: a systematic review. International journal for quality in health care. 2011 Nov 22;24(1):28-38.
8. Ocloo J, Matthews R. From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Qual Saf. 2016 Mar 18:bmjqs-2015.
9. Rathert C, Wyrwich MD, Boren SA. Patient-centered care and outcomes: a systematic review of the literature. Medical Care Research and Review. 2013 Aug;70(4):351-79.
10.Simpson EL, House AO. Involving users in the delivery and evaluation of mental health services: systematic review. Bmj. 2002 Nov 30;325(7375):1265.
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