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 Table of Contents  
Year : 2022  |  Volume : 7  |  Issue : 2  |  Page : 52-54

Are you ready for patient engagement in health care?

1 Consultant Oral Pathologist, Kozhikode, Kerala, India
2 General Medical Practitioner, Kozhikode, Kerala, India
3 Clinical Practitioner, Daman, Daman and Diu, India
4 Reader, Oral and Maxillofacial Pathology, School of Dental Sciences, KIMS Deemed to be University, Karad, India
5 Consultant Anesthesiologist and Intensivist, Kozhikode, Kerala, India

Date of Submission13-May-2022
Date of Acceptance29-May-2022
Date of Web Publication30-Dec-2022

Correspondence Address:
Dr. Vinit Shashikant Patil
Consultant Oral Pathologist, Kozhikode, Kerala
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/ijmo.ijmo_9_22

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Active patient engagement (PE) is increasingly viewed as essential to ensuring that patient-driven perspectives are considered throughout public health and the research process. However, guidance for PE in research does not exist, the evidence base for practice is limited, and we know relatively little about underpinning values that can impact on PE practice. An explicit statement of values seeks to align all stakeholders on the purpose, practice, and credibility of PE activities. An innovative, flexible, and transparent research environment is valued as essential to developing a trustworthy evidence base with which to underpin future guidance for good PE practice. The recent focus on PE acknowledges that patients have an important role to play in their own health care. This includes reading, understanding and acting on health information (health literacy), working together with clinicians to select appropriate treatments or management options (shared decision-making), and providing feedback on health-care processes and outcomes (quality improvement). This review explores the values that should underpin PE in contemporary public health research to help inform future good practice guidance.

Keywords: Health research, patient engagement, patient involvement, patient-reported outcomes, public health, values

How to cite this article:
Patil VS, Sidhulal K, Vaghela N, Belgaumi U, Abdulla P P, Ahmed JB. Are you ready for patient engagement in health care?. Int J Med Oral Res 2022;7:52-4

How to cite this URL:
Patil VS, Sidhulal K, Vaghela N, Belgaumi U, Abdulla P P, Ahmed JB. Are you ready for patient engagement in health care?. Int J Med Oral Res [serial online] 2022 [cited 2023 May 28];7:52-4. Available from: http://www.ijmorweb.com/text.asp?2022/7/2/52/366314

  Introduction Top

Patient engagement (PE), or patient and public involvement, is increasingly viewed as a cornerstone of health-related research activities and policy-making.[1] Effective PE can profoundly change how patient-centered research is conceptualized and conducted, resulting in better patient-centered care, management, and measurement.[2],[3],[4] However, these partnerships require new skills and sustained efforts for all stakeholders: understanding the values that different stakeholders aspire to provide an essential foundation for effective PE. The values associated with good PE in health and social care research have recently been defined as “the established collective moral principles and accepted standards of a person or a social group; principles, standards or qualities considered worthwhile or desirable.” In supporting patients and health professionals to participate in effective PE, an agreed statement of values endeavors to support everyone in understanding their role – why we do it, what is important, and to whom. Experience has shown that different stakeholders often hold different values associated with the practice of PE; such discrepancies in values can result in conflict and a failure in the conduct of effective PE and its likely impact.[5],[6],[7],[8],[9],[10],[11] In developing our understanding of the diversity in values, we can acknowledge and understand them and work within a framework that considers different perspectives and different motivations and recognizes the potential for conflict to emerge when such diversity exists. Developing strategies for managing such potential conflict is essential, highlighting the importance of understanding values at the outset of a program of research and identifying common values that everyone recognizes as well as respecting the diversity of values that may be present in a research team. A consensus process involving members of the Health Technology Assessment International (HTAi) Patient and Citizen Involvement Group recently defined five core values and standards to capture common understanding with which to underpin effective PE in HTAi processes: (1) relevance, (2) fairness, (3) equity, (4) legitimacy, and (5) capacity building. Most research about engaging patients in safety improvement focuses on patients being proactive about minimizing harm in their own care. Interventions largely revolve around providing patient information or education. There has been a proliferation of educational programs seeking to engage patients in safety improvement, but there is little evidence that these are successful in promoting expected behavioral changes.[7]

  What Can Patients Contribute And Why it is Needed? Top

Patients bring the perspective as “experts” from their unique experience and knowledge gained through living with a condition or illness, as well as their experiences with treatments and the health-care system. Involvement of patients in research increases its quality and, as health-care providers utilize research evidence in their practice, increases the quality of care. “Engaging patients in health care research makes (investments in) research more accountable and transparent, provides new insights that could lead to innovative discoveries, and ensures that research is relevant to patients concerns. The international experience with engaging citizens and patients in research has shown that involving them early in the design of studies, ideally as early as at the planning stage, leads to better results.”[1] By encouraging a diversity of patients to tell their stories, new themes may emerge to guide research. Patients gain many benefits through their involvement including increased confidence and master new skills, access to information they can understand and use, and a feeling of accomplishment from contributing to research relevant to their needs.[8],[9],[10],[11],[12],[13],[14]

  Public Health Literacy Top

In the primary care setting, most interventions tested have focused on reducing medication-related safety issues. Errors in the prescription and use of medicines are common problems and sometimes patients contribute by failing to take their medication as prescribed. There is a growing body of research about educational interventions to improve prescription concordance. Interventions in primary care have the potential to improve compliance, although the evidence is mixed.[8],[9] Examples of educational interventions include sending electronic medication safety messages or using computerized tools to provide education. These interventions have been found to improve engagement and reduce adverse drug events.[10],[11] Education via post and telephone has also been found to reduce adverse drug events.[12],[13] Leaflets, videos, and other educational materials have been found to encourage patients to raise concerns about the safety of the care they receive.[14],[15] However, many studies focus on patient satisfaction rather than safety events or measures of harm. Educating health-care professionals about the importance of the patient role and how to engage with patients is another key area of study. Evidence suggests that health-care professionals can exercise power in the consultation through the use of professional or expert language or technical jargons, which may act as a barrier to communication.[16] Providers' perceptions of a patient have been found to influence their consultation style, with more patient-centered consultations occurring with those patients who were perceived to be better communicators.[17]

  Obtaining Patient Feedback Top

A small number of studies have examined the potential of using retrospective feedback from patients as a way to improve safety in primary care. In one of these studies, feedback was obtained through surveys or formal event-reporting systems for patients.[18] These approaches can provide useful data that may not be available from other sources. However, surveys, online tools, and other forms of feedback with low levels of interactivity may be unlikely to result in significant changes to patient safety unless there is a committed team actively using the information to drive forward improvements. The impact of these strategies depends on what is done with the information after collection and whether a structured approach is taken to create tangible changes in systems and practices to improve patient safety.[3]

  Engaging Patients for Improvement Top

Health-care services have engaged patients in planning committees, patient and public engagement groups, patient advisory committees, or in prospective surveys to encourage change. Patient-led education of health professionals has been proposed as a strategy to engage patients in developing safer services, but current evidence is limited about its impact. Open disclosure of safety incidents to patients and engaging patients and their families in remedies is seen as valuable by patients.[16],[17],[18],[19]

  Patient and Family Engagement Top

It is an integral strategy to develop high-quality, integrated, and people-centered health services. PE is critical to shaping the way forward. It has the potential to save lives through safety and quality improvements informed by patient experience. The evidence suggests that leaders need to make a commitment to proactively engage patients in their own care and to implement the lessons learned from care experiences. Health-care providers and policy-makers need to create opportunities for engaging patients and their families in a dialog at all levels: in direct care at an individual level; in organizational governance and system design; and at the level of policy development and implementation through education, research, regulation, and standard setting.[20] Creating a culture of patient safety helps to foster openness and transparency and may strengthen the patient–provider relationship. Meaningful and effective engagement begins with empowering patients and health-care providers. Patients need to have sufficient information about their health conditions and about health-care systems and processes so that they can be a knowledgeable partner in decision-making. Thus, it is important for health-care providers and policy-makers to ensure that patients and families have access to accurate, appropriate, and up-to-date information and understand how to use this information. Patient-held records may support the engagement and empowerment of patients.[21] Cultural and social norms impact on the engagement process and what is appropriate and feasible in one context may not be acceptable in another. However, the underpinning principles of recognizing the value of patients, families, carers, and wider communities as partners in care are important across all contexts.

  Conclusion Top

The meaningful engagement of patients will facilitate research committee members for planning, designing, and guiding the project as it progresses. Patient's involvement in decision-making processes and in bringing forward priority issues for research is integral to patient-oriented research. As competent PE researchers. “They have mastered the specific research skills and know how to engage other patients, capture and articulate their ideas, support these ideas with valid research, and bring them to the table.” ♣ As contributors to identifying the right research question, study design, recruitment, data collection, and analysis of findings. Patients can also have a role in reviewing stories to identify common threads/relevant themes. This ensures that the outcomes important to patients are supported and measured. ♣ As supporters of participant-friendly research studies, improving access to patients via peer networks and accessing difficult-to-reach patients and groups.

Financial support and sponsorship


Conflicts of interest

There are no conflicts of interest.

  References Top

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Haywood K, Lyddiatt A, Brace-McDonnell SJ, Staniszewska S, Salek S. Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: An international, multiple-stakeholder perspective. Qual Life Res 2017;26:1393-404.  Back to cited text no. 3
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Volk RJ, Coulter A. Advancing the science of patient decision aids through reporting guidelines. BMJ Qual Saf 2018;27:337-9.  Back to cited text no. 7
Feldman-Stewart D, O'Brien MA, Clayman ML, Davison BJ, Jimbo M, Labrecque M, et al. Providing information about options in patient decision aids. BMC Med Inform Decis Mak 2013;13 Suppl 2:S4.  Back to cited text no. 8
Stacey D, Légaré F, Col N. Decision aid for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2017;4:CD001431.  Back to cited text no. 9
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Sepucha KR, Borkhoff CM, Lally J, Levin CA, Matlock DD, Ng CJ, et al. Establishing the effectiveness of patient decision aids: Key constructs and measurement instruments. BMC Med Inform Decis Mak 2013;13 Suppl 2:S12.  Back to cited text no. 11
Clayton JA, Tannenbaum C. Reporting sex, gender, or both in clinical research? JAMA 2016;316:1863-4.  Back to cited text no. 12
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Welch V, Doull M, Yoganathan M, Jull J, Boscoe M, Coen SE, et al. Reporting of sex and gender in randomized controlled trials in Canada: A cross-sectional methods study. Res Integr Peer Rev 2017;2:15.  Back to cited text no. 15
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Parry M, Bjørnnes AK, Toupin-April K, Najam A, Wells D, Sivakumar A, et al. Patient engagement partnerships in clinical trials: Development of patient partner and investigator decision aids. Patient 2020;13:745-56.  Back to cited text no. 18
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