Introduction
The sphere of healthcare is rapidly developing in the contemporary technology- and knowledge-driven world. Healthcare systems in general and the nursing science and practice in particular increasingly generate and rely on evidence-based approaches that are cultivated by deliberate research efforts. Multiple social determinants of health inform relevant health challenges on a global scale and allow health care professionals to adjust their methods of treatment and prevention according to the needs of the served populations. For that matter, it is particularly important to involve patients and the general public in healthcare for research, improvement and educational purposes. Indeed, Patient, Carer and Public Involvement (PCPI) is a fundamental practice that has been present in the scholarly literature for decades and requires revisiting now. This paper is designed to review the literature and critically evaluate the models, approaches and policies of PCPI. It is argued that continuous development and improvement of approaches for effective patient engagement are essential for ensuring relevant and high-quality care.
Evaluation of Approaches, Policies and Models of Patient Involvement
Historical and Contemporary Approaches and Policies
From a historical perspective, patient involvement in healthcare has evolved significantly. As the research literature on the topic demonstrates, the approaches to engaging patients have changed throughout the past five decades in accordance with the shifts in culture (Hoving et al., 2010). Indeed, in the 1960-s and 1970-s, the approaches to patient engagement were characterised by the necessity and appropriateness validations, which made patient engagement an obligatory element of governmental policies and healthcare practices (Dukhanin, Topazian and DeCamp, 2018). At this time, patient engagement was regarded as an important element of research and education for drawing on realistic health analysis (Forsythe et al., 2019). Thus, in the past, patient engagement was mostly used for research and education.
While in the 1970s, medical practitioners were viewed as an authority and not patients, this tendency changed in the following decades, when patients’ rights became more pronounced and integrated into health promotion initiatives (Hoving et al., 2010). Throughout history, “there has also been systematic public involvement in healthcare decision-making via regional or local health advisory councils, committees, boards or citizen juries” (Dukhanin, Topazian and DeCamp, 2018, p. 889). At present, patient engagement is viewed by healthcare organizations as an investment in long-term benefits (Vat et al., 2020). Thus, PCPI approaches and policies evolved throughout the past five decades.
Models of PCPI
A variety of PCPI models have been used in the healthcare setting. The models that are used in healthcare research include the Patient Health Engagement model, the Public Programmes Team, Health-Related Big Data Research funded by NHS, and others (Beier, Schweda and Schicktanz, 2019; Graffigna and Barello, 2018; Holmes et al., 2019). The diversity of models allows for establishing the active involvement of patients in healthcare. However, the effectiveness and meaningfulness of patient engagement might be hindered by tokenism, which is a practice of fictitious involvement of participants without their practical influence on the outcomes (Coren et al., 2021; Macgregor, 2022). Indeed, tokenism jeopardises research meaningfulness due to the fake involvement that does not reflect actual problems or views. In a similar manner, parity of involvement plays a significant role in contemporary PCPI due to the necessity of ensuring that consenting adults comply with the requirements of involvement criteria (Chen et al., 2018). Thus, contemporary models of PCPI strive to eliminate tokenism and ensure meaningfulness and parity of patient involvement.
The Nursing Speciality’s Relation to PCPI
Nursing is an area of health care that involves direct interaction between a practitioner and a patient; for that reason, PCPI is essential for nursing practice and research. Within the scope of nursing practice, the importance of ensuring patient satisfaction is one of the key goals of the nursing profession (Lotfi et al., 2019). Since nurses provide care to people whose environment is constantly changing, it is essential for them to identify emerging health issues to develop relevant measures (Archibald and Barnard, 2018; Nilsen et al., 2020). In a similar manner, the involvement of the public in the research process nurses initiate allows the healthcare systems to be aware of the tentative concerns and problems the served population faces (Pollock et al., 2021). Moreover, the increasing relevance of patient-centred care in nursing necessitates active patient involvement in research to maximize individuals’ health benefits depending on their needs conditioned by culture, environment, and other particularities (Bucknall et al., 2019; Hwang, Kim and Chin, 2019) Thus, PCPI equips nurses with necessary evidence and data on how to improve patient care in both short- and long-term perspectives.
Enablers and Barriers for Co-production in Patient Care
While the reviewed literature has vividly demonstrated the benefits of patient involvement for healthcare systems, it is characterized by a variety of facilitating and hindering factors. Indeed, according to Malloggi et al. (2020), the barriers to proper PCPI include differences in populations’ beliefs and attitudes, lack of organizational funding and personnel training, patient recruitment difficulties, and insufficient institutional recognition of PCPI. Bergerum et al. (2022) and Souza, Hoffmeister and Moura (2022) add to this list of barriers stating that ineffective communication and organisational culture, as well as measurement difficulty, have complicated PCPI. On the other hand, the enablers of successful PCPI recognized in the scholarly literature include transparency, bilateral education, and realistic expectations (Aartsma-Rus, Vroom and O’Reilly, 2022). The ambiguity of factors influencing PCPI indicates the complexity of this process and the need for facilitating it by minimizing barriers where possible.
Educational Programs for Engagement
As evidenced by previously mentioned literature findings, the lack of proper training of health care workers serves as a barrier to proper PCPI. Therefore, the education of practitioners is intertwined with PCPI training, which has to be an immediate aspect of healthcare schooling. According to Goode et al. (2019), community-based models are particularly effective for education and practice. They allow for setting practitioners’ learning into the environment of patients’ life where their involvement might be facilitated.
Other theory-based models are popular among educators involved in training practitioners within the framework of PCPI. Indeed, Activity Theories and Patient-Centred models are used in the education setting to ensure the integration of PCPI into healthcare practice (Bennett-Weston, Gay and Anderson, 2022). Mentoring programmes, co-teaching faculty and communication-based education are used as means for PCPI-related practitioner education (Dijk, Duijzer and Wienold 2020). When critically evaluating the identified models, one might establish that their variety is a positive indicator due to the multitude of approaches that maximizes beneficial outcomes in terms of practitioners’ skills. Importantly, the community-based models might be the most effective since they enable direct interaction between patients and practitioners, which is an essential aspect of patient-centred care. However, the ambiguity of these models’ effectiveness hinders their applicability in the educational setting and requires justification with evidence over time.
Patient Involvement in Research and Service
Patient involvement in medical research and service is widely addressed in the reviewed literature due to the importance of this aspect for the contemporary healthcare field. According to Scholvinck, Pittens and Broerse (2020), since patients have become an invaluable source of medical information due to their daily encounters with their health issues and their intensified participation in research and informing service decision-making, the development of specific policies is relevant. For example, the European Patients’ Academy on Therapeutic Innovation has generated an effective policy that addresses researchers’ responsibilities and protects patients’ rights and safety during research processes and services impacted by PCPI (Spindler and Lima, 2018). Governmental, academic, and organizational policies benefit the development of PCPI and monitor the proper conditions for patient involvement and its outcomes.
Conclusion
In summation, the reviewed scholarly literature on the topic of PCPI has demonstrated a wide range of evidence suggesting the omnipresence of patient engagement in the nursing practice, research, and patient education. The evolution of engagement approaches and policies emphasises the increasing reliance of the contemporary healthcare systems on patient outcomes, making the served population a priority. The relevance of PCPI for the nursing speciality has been justified by numerous studies showing that the direct interaction between nurses and patients requires PCPI in both practice and research. Moreover, specific factors enabling successful PCPI were identified, including transparency and education; barriers to proper PCPI include communication impairments, insufficient training, funding, and institutional recognition. To address these barriers, proper educational models and research and service regulation policies are implemented.
Reference List
Aartsma-Rus, A., Vroom, E., and O’Reilly, D. (2022) ‘The role of patient involvement when developing therapies. Nucleic Acid Therapeutics, 32(2), pp. 118-122.
Archibald, M. M., and Barnard, A. (2018) ‘Futurism in nursing: technology, robotics and the fundamentals of care’, Journal of Clinical Nursing, 27(11-12), pp. 2473-2480.
Beier, K., Schweda, M. and Schicktanz, S. (2019) ‘Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research’, BMC Medical Informatics and Decision Making, 19(1), pp. 1-10.
Bennett-Weston, A., Gay, S., and Anderson, E. S. (2022) ‘A theoretical systematic review of patient involvement in health and social care education’, Advances in Health Sciences Education, 2022, pp. 1-26.
Bergerum, C. et al. (2022) ‘We are data rich but information poor’: how do patient-reported measures stimulate patient involvement in quality improvement interventions in Swedish hospital departments?’, BMJ Open Quality, 11(3), pp. 1-10.
Bucknall, T. et al. (2019) ‘Nurses’ decision‐making, practices and perceptions of patient involvement in medication administration in an acute hospital setting’, Journal of Advanced Nursing, 75(6), pp. 1316-1327.
Chen, J. Y. et al. (2018) ‘The risk factors of residual lesions and recurrence of the high-grade cervical intraepithelial lesions (HSIL) patients with positive-margin after conization’, Medicine, 97(41), pp. 1-7.
Coren, F. et al. (2021) ‘Beyond tokenism in quality management policy and programming: moving from participation to meaningful involvement of people with HIV in New York State’, International Journal for Quality in Health Care, 33(1), pp. 1-9.
Dijk, S. W., Duijzer, E. J. and Wienold, M. (2020) ‘Role of active patient involvement in undergraduate medical education: a systematic review’, BMJ Open, 10(7), pp. 1-11.
Dukhanin, V., Topazian, R. and DeCamp, M. (2018) ‘Metrics and evaluation tools for patient engagement in healthcare organization-and system-level decision-making: a systematic review’, International Journal of Health Policy and Management, 7(10), p.889.
Forsythe, L.P. et al. (2019) ‘Patient engagement in research: early findings from the Patient-Centered Outcomes Research Institute’, Health Affairs, 38(3), pp. 359-367.
Goode, J. V. et al. (2019) ‘Community-based pharmacy practice innovation and the role of the community-based pharmacist practitioner in the United States’, Pharmacy, 7(3), pp. 106-123
Graffigna, G. and Barello, S. (2018) ‘Spotlight on the Patient Health Engagement model (PHE model): a psychosocial theory to understand people’s meaningful engagement in their own health care’, Patient Preference and Adherence, 12, pp. 1261-1271.
Holmes, L. et al. (2019) ‘Innovating public engagement and patient involvement through strategic collaboration and practice’, Research Involvement and Engagement, 5(1), pp. 1-12.
Hoving, C. et al. (2010) ‘A history of patient education by health professionals in Europe and North America: from authority to shared decision making education’, Patient Education and Counseling, 78(3), pp. 275-281.
Hwang, J. I., Kim, S. W. and Chin, H. J. (2019) ‘Patient participation in patient safety and its relationships with nurses’ patient-centered care competency, teamwork, and safety climate,’, Asian Nursing Research, 13(2), pp.130-136.
Lotfi, M. et al. (2019) ‘Assessment of nurse–patient communication and patient satisfaction from nursing care’, Nursing Open, 6(3), pp. 1189-1196.
Macgregor, A. (2022) ‘Meaningful participation or tokenism for individuals on community based compulsory treatment orders? Views and experiences of the mental health tribunal in Scotland’, Journal of Mental Health, 31(2), pp. 158-165.
Malloggi, L. et al. (2020) ‘Patient involvement in healthcare workers’ practices: how does it operate? A mixed-methods study in a French university hospital’, BMC Health Services Research, 20(1), pp. 1-12.
Nilsen, P. et al. (2020) ‘Characteristics of successful changes in health care organizations: an interview study with physicians, registered nurses and assistant nurses’, BMC Health Services Research, 20(1), pp. 1-8.
Pollock, D. et al. (2021) ‘Undertaking a scoping review: a practical guide for nursing and midwifery students, clinicians, researchers, and academics’, Journal of Advanced Nursing, 77(4), pp. 2102-2113.
Scholvinck, A. F. M., Pittens, C. A., and Broerse, J. E. (2020) ‘Patient involvement in agenda-setting processes in health research policy: a boundary work perspective’, Science and Public Policy, 47(2), pp. 246-255.
Souza, A. D. Z. D., Hoffmeister, L. V., and Moura, G. M. S. S. D. (2022) ‘Facilitators and barriers of patient involvement in hospital services: integrative review’, Texto & Contexto-Enfermagem, 31, pp. 1-19.
Spindler, P. and Lima, B. S. (2018) ‘The european patients academy on therapeutic innovation (EUPATI) guidelines on patient involvement in research and development’, Frontiers in Medicine, 5(310), pp. 1-3.
Vat, L. E. et al. (2020) ‘Evaluating the “return on patient engagement initiatives” in medicines research and development: a literature review’, Health Expectations, 23(1), pp. 5-18.