Background: Marginalized population groups are more likely to be under-represented in autistic children’s research. Rationale: Our understanding of the low levels of research engagement among autistic children from these marginalized groups is limited. Objectives: (1) to examine some of the under-represented populations in autism children’s research; (2) to assess the facilitators and barriers contributing to patient engagement in autistic children’s research; (3) to suggest considerations for the development of a more equitable approach to autistic children’s research. Methods: A scoping review was conducted on studies published during January 2011-December 2021 in five electronic research databases by two reviewers in duplicate. English qualitative/quantitative/mixed methods studies that engaged autistic children aged 2-18 and/or their parents as research participants or in the process of patient-oriented research were included. Results: Some of the under-represented marginalized autistic children populations identified from the 21 included studies were: (1) those living in developing/under-developed countries, (2) those who received autism services from centres that do not collaborate with researchers, (3) families of ethnic minority in Western countries, (4) autistic children who received late diagnosis, (5) families whose first language is not English, (6) male parents of autistic children, (7) female autistic children, (8) families with low household income who are not enrolled in governmental healthcare financial support program and (9) those who lack technological literacy skills. Facilitators of patient engagement were: (1) building trust-based relationships among stakeholders, (2) engaging patients throughout research development, and (3) patient engagement in research funding processes. The barriers were: (1) allocation of research funding, (2) identity conflict, (3) applicability of research evidence, and (4) social stigmatization towards autism. Discussion: To enhance patient engagement in autistic children’s research, policymakers, researchers and funders should prioritize participant’s needs in all stages of the research process. Conclusion: The diverse identities autistic children carry should be better acknowledged. An equity approach to research is needed. / Thesis / Master of Public Health (MPH) / Autistic children from certain marginalized population groups are less likely to be engaged in research. This thesis aims to examine the facilitators and barriers contributing to this phenomenon. As predicted, several child and family characteristics, socio-economic factors, and contextual research structures appear to be associated with patient engagement in autism research. Several recommendations are made for policymakers, researchers and funders on ways to prioritize autistic populations’ needs, enhance patient engagement, and promote a more equitable approach to autism research.

In recent years, patient-centredness has become a central focus in improving health care quality. In 2010, the Canadian Medical Association (CMA) launched a four-year action plan aimed at transforming Canada’s health care through a framework aimed at creating a culture of patient-centred care, accountability and responsibility. Several of Canada’s provincial governments proceeded to launch patient-centred action plans, including the Government of Ontario’s “Patients First” framework, which prioritizes patient engagement and increased transparency. As an example of how organizations are putting these values into practice, the College of Physicians and Surgeons of Ontario (CPSO)’s transparency initiative, which aims to make more physician-specific information available to the public in order to help patients make informed decisions about their health care, was examined. This thesis asks how physicians and members of the public feel that the transparency initiative aligns with the CPSO’s public interest mandate. Using discourse analysis, 226 responses by physicians, members of the public and organizations on a discussion forum in the Policy Consultations section of the CPSO’s website were analyzed in order to identify the main themes in arguments for or against increased transparency. The results show that physicians and members of the public tended to differ in their views on the purposes and probable outcomes of the CPSO’s transparency initiative. The majority of physicians worried about patients’ ability to accurately understand and utilize the information being provided to them, and the negative impact that this might have on individual physicians and on the physician-patient relationship more broadly. Most members of the public had a more positive outlook on the potential for transparency to build public trust, help patients become informed and engaged decision-makers and improve patient safety.

Genetic counselors, along with the National Society of Genetic Counselors, desire evidence-based research and data assessing the value of genetic counseling in genetic service delivery. This pilot study was designed to gather data about genetic counseling outcomes as well as analyze the feasibility of a study looking at new genetic outcome measures in the prenatal setting. Implementation of the methods used for data collection were evaluated by analysis of the appropriateness, acceptability, feasibility, fidelity, and adoption of the research protocol at three sites. We found that there is a hierarchy between implementation outcomes and it may be necessary to satisfy one implementation outcome before the next one can be achieved. We also found that patient engagement is a key component to evaluating the success of methods used for data collection. These findings may be useful to individuals designing future research studies used to measure genetic counseling outcomes.

Patient engagement in research has many benefits including the alignment of research aims, projects, and outcomes with those of the ultimate end-user. As a result, patient engagement is becoming increasingly established in many areas of health research. Missing from this growing body of evidence are details about how patient partners (i.e., individuals with lived experience of a health condition including informal caregivers, family and friends) are compensated for their contributions as well as existing barriers or challenges to compensation. The overall aim of my thesis is to synthesize and assess the current landscape of patient partner compensation. First, I conducted a systematic review that identified a cohort of published patient engagement research and assessed the prevalence of reporting compensation and identified current compensation practices. Second, we surveyed researchers identified by the systematic review and their affiliated institutions to understand researcher attitudes towards compensation and any experienced barriers and challenges to offering financial compensation to patient partners. Third, we conducted a scoping review to synthesize available guidance and policy documents that inform patient partner compensation. Broadly, these projects found that: 1) reporting of patient partner financial compensation is modest and non-financial methods of compensation (e.g., co-authorship) are reported more often, 2) researchers are generally positive about their abilities and intend to offer financial compensation to patient partners, however institutional barriers including lack of policy or support persist, and 3) the majority of identified guidance recommend offering financial compensation to patient partners and discuss benefits of such practices including fostering a sense of equality between researchers and patient partners. Findings from this thesis may influence research practices by informing stakeholders of the benefits of offering financial compensation to patient partners and guiding the development of compensation strategies. Lastly, findings may inform implementation strategies at the institutional and funder level, including adoption of guidance and procedure, to better support researchers in navigating compensation.

The James Lind Alliance approach is a widely used method for research priority setting, yet comprehensive reviews of its implementation are lacking. This thesis therefore focused on reviewing and analyzing the barriers and facilitators to its implementation and on carrying out the early stages of our own priority setting partnership to prioritize research in myelodysplastic syndromes (MDS). A scoping review of the barriers and facilitators encountered when undertaking a James Lind Alliance priority setting partnership was conducted. Our analysis identified that most barriers could be categorized into three main areas: representation, data collection and processing and result useability. We also identified a number of methods that were used successfully to overcome some of the barriers and offered our suggestions for further study. Along with the Aplastic Anemia and Myelodysplasia Association of Canada, we conducted the initial stages of the Canadian MDS Priority Setting Partnership. We were able to collect 206 relevant research questions from people living with MDS, their caregivers and front line health professionals which can be put forward for further prioritization.

Research shows that one of the major contributors for an extended stay in a long-term care facility is lack of knowledge regarding goals for rehabilitation after being discharged from an acute care facility. It is important to determine patients’ levels of engagement because individuals who are actively involved in discharge planning and rehabilitation goals are able to manage their ongoing care more effectively, which results in increased quality of life. The data was collected using a survey method and the instrument used was the Patient Activation Measure or PAM which is a highly accurate and reliable tool. The 22 question survey was used to determine the level of patient activation among patients who are currently receiving rehabilitation services at a rehabilitation or long-term care facility. Determining the level of engagement in patients receiving rehabilitation services will provide health care providers insight into the how willing patients are to be engaged in their own care. A total of 11 surveys were completed by patients varying age, gender, and length of stay. Each patient was currently receiving rehabilitation services at National Healthcare Corporation of Johnson City or John M. Reed Health and Rehabilitation Facility in Limestone.

Background: Commitment to patient engagement in research provides significant opportunities to advance our understanding of patients’ experience whilst fostering sensitivity and progress in research. Yet, people who are frail or seriously ill are rarely given the opportunity to partner across the course of a research study. Little is known about their impact on the conduct of research and the best ways of ‘meaningfully’ involving them as research partners. A series of studies using multiple methods were conducted to explore meaningful engagement of frail and seriously ill patients as partners in research. Study 1: A systematic review with narrative synthesis was conducted to describe the engagement of frail and seriously ill patients as research partners across the research cycle. Thirty eligible studies showed emerging evidence that research partnerships with frail and seriously ill patients can be achieved successfully. Frailty and serious illness present legitimate concerns due to the vulnerability of patient-partners but can be successfully mitigated when researchers ensure timing and methods of engagement are flexible and practical, and emotional needs of patient partners are consistently addressed. Study 2: A qualitative sub-analysis of the prior systematic review was conducted to identify ethical considerations of engaging frail and seriously ill patients as research partners. Findings revealed that researchers and patients should work together to clarify the intent and outcomes of the partnership, actively address relational and intellectual power differentials, recognize and minimize the potential for unintended harm, and strive to maximize the benefits of partnership. Study 3: An analytic autoethnography was conducted to explore how patient engagement is embodied and situated during serious illness. Findings provide a unique contribution to the discourse on representation and contested identity. Current concerns of tokenism are countered through recognition of ways in which patients ‘find’ and ‘make’ meaning through research partnerships. Partnering with seriously ill patients offers enormous potential to advance research through harnessing the power of embodied knowledge production. Conclusion: This dissertation highlights the importance of ensuring that the voices of frail and seriously ill patient-partners’ are heard first-hand. It further demonstrates, the current methodological imperative of patient engagement requires novel approaches to both enacting and evaluating patient engagement.

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Thesis advisor: Jane Flanagan / BACKGROUND: Breast cancer survivors experience a range of needs in the post-treatment phase as they transition into survivorship and beyond. The transition to survivorship requires breast cancer survivors to actively engage in self-managing their care, but little is known about patient engagement into survivorship care and what factors may contribute to this. Information is needed to further explore patient engagement into survivorship care, what factors may contribute to it and which patients are more likely to engage in their care and thus be better equipped to self-manage during survivorship. PURPOSE: The purpose of this study was to explore how demographic/personal factors and survivorship outcomes are related to and may contribute to patient engagement in early stage breast cancer survivors. METHODS: A cross-sectional, web-based self-report national survey was conducted using measures assessing personal/demographic factors, survivorship outcomes: health-related quality of life (HRQOL), fear of cancer recurrence (FCR), cancer health literacy (CHL) and two measures of patient engagement (patient activation (PA) and knowing participation in change (KPC). There was one open-ended question regarding additional survivorship concerns, not addressed in the previous survey items. Participants were recruited using Dr. Susan Love’s Army of Women Research Foundation and Craigslist. Data were analyzed via bivariate associations and backwards linear regression modeling in SPSS. RESULTS: The final sample included 303 participants (301 females and 2 males) with a mean age of 50.70 years. The sample was predominantly White, non-Hispanic and equally dispersed across the United States. Patient engagement, as represented by PA and KPC, was significantly correlated with 13 predictor variables and there were 10 predictor variables that resulted in significant ANOVA relationships with PA and KPC. In both the KPC and PA regression models, HRQOL significantly predicted for patient engagement. In the KPC regression model, social support and level of education also significantly predicted for patient engagement and receipt of a survivorship care plan contributed unique variance to the model. The open-ended question response categories included: physical concerns, mental health concerns, financial toxicity, social support, body image concerns, other concerns or no concerns/none. CONCLUSIONS: This study provides preliminary evidence that personal/demographic factors and survivorship outcomes may contribute to patient engagement in breast cancer survivors. Using assessment tools that measure factors such as HRQOL, social support, education level and patient engagement may give providers some insight as to which survivors may be ready to engage in survivorship care and those that may need more resources and/or support. Additional studies are needed to replicate and validate these results. More research is needed aimed at maximizing patient-centered care, patient engagement and ultimately improving SC. Keywords: breast cancer survivor, survivorship, patient engagement, health-related quality of life, social support. / Thesis (PhD) — Boston College, 2019. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.