The underlying philosophy of patient-centred care (PCC) advocates for patients to have an active role in all areas of their care, including broader areas of the health care system such as planning and evaluation. Despite efforts made in the past decade that would see greater patient engagement, conventional evaluation approaches continue to dominate the landscape in health services evaluation. To date, limited empirical research has examined the effects of patient engagement or the best approach to engage patients (Abelson et al., 2015; Baker, 2014; Baker, Judd, Fancott, & Maika, 2016). Furthermore, a relative lack of collaboration and shared knowledge exists between the evaluation community and health sector in the rapidly developing area of patient engagement and the development of best practices. Consequently, health organizations continue to struggle with how best to involve patients (i.e., process) in health service improvement initiatives, as well as learn from patient experience (Baker, 2014; Baker, Judd, et al., 2016; Luxford et al., 2011).
This dissertation responded to some of these challenges and through this intervention study, the specific purpose of the thesis study was to gain a better understanding of the process of patient engagement in planning and evaluation by addressing the following research questions:
1. What are the facilitators and barriers of engaging patients in planning and evaluation of health services and why?
2. What did the process of engagement look like with respect to Cousins and Whitmore’s (1998) three dimensions of collaborative inquiry?
3. What are the observed effects of the engagement process?
This longitudinal qualitative case study began with the creation of the Patient and Family Engagement Committee (PFEC) at the Ottawa Hospital Psychosocial Oncology Program (PSOP) and completed an evaluation project over a period of six months. The research study occurred in parallel with the evaluation project and was designed to gain a better understanding of the process of patient engagement and the role that evaluation plays in this context. The study consisted of three phases and data collection relied on multiple sources.
Facilitators that influenced the patient engagement process include: accommodating participant needs, commitment, orientation meeting, designated lead with evaluation skills, homework between meetings, and mutual respect. Having a designated lead, mutual respect, and commitment to the project were the three most highly endorsed facilitators at the end of the project. Conversely, barriers identified include time and resources, imbalanced participation, change in health status, and living at a distance. Time and resources was endorsed as the most significant barrier to the patient engagement process across all three phases of the study. Motivations for participant involvement revolved around giving back, improving health services, learning, commitment to research/evaluation, and providing or hearing a unique perspective. The study examined participatory aspects of the focal evaluation using Cousins and Whitmore’s (1998) three fundamental dimensions of process in collaborative approaches to evaluation: stakeholder diversity, control of evaluation process, and depth of participation. Findings revealed that intended benefits of participant involvement included reach to decision-makers, improved health services, increased diffusion of patient/family engagement, improved access/awareness of services, and a follow-up to assess influence of engagement. Participants’ experiences of being involved invoked enthusiasm for the project, were personally rewarding, instilled a sense of optimism that the project would have an influence, closed the loop on healing, contributed to a shift from a personal to broader health care focus, and contributed to learning.
Further research is needed to gain a better understanding of the processes involved or evaluation approaches that could contribute to translating patient engagement into improved outcomes. The findings of this study have enhanced understanding of key contributions that patients, family members, health professionals, and evaluators bring to the patient engagement process, and enriched understanding of key facilitators and barriers to ensure successful patient engagement.
| Identifer | oai:union.ndltd.org:uottawa.ca/oai:ruor.uottawa.ca:10393/37893 |
| Date | 17 July 2018 |
| Creators | Gilbert, Nathalie |
| Contributors | Cousins, J. Bradley |
| Publisher | Université d'Ottawa / University of Ottawa |
| Source Sets | Université d’Ottawa |
| Language | English |
| Detected Language | English |
| Type | Thesis |
| Format | application/pdf |
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