Tamara Mccarron - Academia.edu (original) (raw)
Papers by Tamara Mccarron
Patient, Mar 15, 2024
Background There is evidence supporting the value of patient engagement (PE) in research to patie... more Background There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence. Methods We used a convergent mixed method design to guide the integration of our survey data and observation data to assess the influence of PE in two groups, comprising patient research partners (PRPs), clinicians, and researchers. A PRP led one group (PLG) and an academic researcher led the other (RLG). Both groups were given the same research question and tasked to design and conduct an inflammatory bowel disease (IBD)-related patient preference study. We administered validated evaluation tools at three points and observed PE in the two groups conducting the IBD study. Results PRPs in both groups took on many operational roles and influenced all stages of the IBD-related qualitative study: launch, design, implementation, and knowledge translation. PRPs provided more clarity on the study design, target population, inclusion-exclusion criteria, data collection approach, and the results. PRPs helped operationalize the project question, develop study material and data collection instruments, collect data, and present the data in a relevant and understandable manner to the patient community. The synergy of collaborative partnership resulted in two projects that were patient-centered, meaningful, understandable, legitimate, rigorous, adaptable, feasible, ethical and transparent, timely, and sustainable. Conclusion Collaborative and meaningful engagement of patients and researchers can influence all stages of qualitative research including design and approach, and outputs.
Journal of the Canadian Association of Gastroenterology, Dec 1, 2023
BMJ Open, Oct 31, 2023
Objective The objective of this study was to explore the outcomes of research engagement (patient... more Objective The objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research. Design We observed engagement in two groups comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. One group was led by a patient research partner (PLG, partner led group) and the other by an academic researcher (RLG, researcher led group). A semistructured guide and a set of critical outcomes of research engagement were used as a framework to ground our analysis. Setting The study was conducted online. Participants Patient research partners (n=5), researchers (n=5) and clinicians (n=4) participated in this study. Main outcome measures Transcripts of meetings, descriptive and reflective observation data of engagement during meetings and email correspondence between group members were analysed to identify the outcomes of PE. Results Both projects were patient-centred, collaborative, meaningful, rigorous, adaptable, ethical, legitimate, understandable, feasible, timely and sustainable. Patient research partners (PRPs) in both groups wore dual hats as patients and researchers and influenced project decisions wearing both hats. They took on advisory and operational roles. Collaboration seemed easier in the PLG than in the RLG. The RLG PRPs spent more time than their counterparts in the PLG sharing their experience with biologics and helping their group identify a meaningful project question. A formal literature review informed the design, project materials and analysis in the RLG, while the formal review informed the project materials and analysis in the PLG. A PRP in the RLG and the PLG lead leveraged personal connections to facilitate recruitment. The outcomes of both projects were meaningful to all members of the groups. Conclusions Our findings show that engagement of PRPs in research has a positive influence on the project design and delivery in the context of qualitative research in both the patient-led and researcher-led group.
BMC Palliative Care, Mar 7, 2018
Background: The aim of palliative care is to improve the quality of life of patients and families... more Background: The aim of palliative care is to improve the quality of life of patients and families through the prevention and relief of suffering. Frequently, patients may choose to receive palliative care in the home. The objective of this paper is to summarize the quality and primary outcomes measured within the palliative care in the home literature. This will synthesize the current state of the literature and inform future work.
Patient involvement in various aspects of healthcare, from improving healthcare quality to promot... more Patient involvement in various aspects of healthcare, from improving healthcare quality to promoting patient safety, has emerged as a critical priority, but understanding how best to engage patients is not well understood. This knowledge gap results in frustrating barriers for decision-makers looking to draw transferable lessons to inform the design of patient engagement programs and processes. Coupled with challenges to the sustainability of health care and the need for innovative solutions, patient engagement has become central to improving both quality and delivery of services. This thesis is comprised of three independent studies that form an overarching program of research. The first study reports the results of a scoping review to understand how health systems are investing in building the capacity and ability of patients. In the second study, we build on the findings from the scoping review and a series of qualitative interviews to inform a provincial survey tool to understand the motivations of individuals who chose to give their time and talents to health organizations. In the third study, we co-designed a framework for patient engagement, grounded in market choice behaviour theory and informed by the literature, a province-wide survey and four provincial stakeholder workshops. While significant research exists that highlights the motivations of the public who choose to participate in decision-making, a limited number of studies have explored these concepts within healthcare. As the roles of patient and family members in the context of healthcare decision-making continue to evolve, the importance of effective and sustainable engagement programs will become increasingly important. A deeper knowledge of patient motivations will not only create meaningful engagement opportunities for patients but will iii also enable health organizations to gain from the experience of these individuals. While further research is needed to support the engagement of diverse groups of stakeholders, the findings from this study have developed an understanding of how patients are motivated to make engagement decisions. This knowledge will help focus patient engagement efforts, thereby improving the efficiency and cost effectiveness of these programs, ensuring their relative sustainability.
JAMA Internal Medicine, Nov 1, 2017
BMJ Open, Feb 1, 2023
Objective To develop a set of patient and family engagement indicators (PFE-Is) for measuring eng... more Objective To develop a set of patient and family engagement indicators (PFE-Is) for measuring engagement in health system improvement for a Canadian provincial health delivery system through an evidence-based consensus approach. Design This mixed-method, multiphase project included: (1) identification of existing measures of patient and family engagement through a review of the literature and consultations with a diverse provincial council of patients, caregivers, community members and researchers. The Public and Patient Engagement Evaluation Tool (PPEET) was selected; (2) consultations on relevance, acceptability and importance with patient and family advisors, and staff members of Alberta Health Services' Strategic Clinical Networks. This phase included surveys and one-on-one semi-structured interviews aimed to further explore the use of PPEET in this context. Findings from the survey and interviews informed the development of PFE-Is; (3) a Delphi consensus process using a modified RAND/UCLA Appropriateness Method to identify and refine a core set of PFE-Is. Participants The consensus panel consisted of patients, family members, community representatives, clinicians, researchers and healthcare leadership. Results From an initial list of 33 evidence-based PFE-Is identified, the consensus process yielded 18 final indicators. These PFE-Is were grouped into seven themes: communication, comfort to contribute, support needed for engagement, impact and influence of engagement initiative, diversity of perspectives, respectful engagement, and working together indicators. Conclusions This group of final patient, family and health system leaders informed indicators can be used to measure and evaluate meaningful engagement in health research and system transformation. The use of these metrics can help to improve the quality of patient and family engagement to drive health research and system transformation.
Begell House, Contact Authors AZ References Books Journals Digital Library Home. Shopping cart ( ... more Begell House, Contact Authors AZ References Books Journals Digital Library Home. Shopping cart ( ). | Current Journal | All Website. Journal of Women and Minorities in Science and Engineering, To view the interactive menu, please click here to install the latest version of the Adobe Flash Player. Journals Books Begell Digital Library Submission. ISSN: 1072-8325 Print. ISSN: 1940-431X Online. You can order a single issue or an individual article ...
Patient involvement in various aspects of healthcare, from improving healthcare quality to promot... more Patient involvement in various aspects of healthcare, from improving healthcare quality to promoting patient safety, has emerged as a critical priority, but understanding how best to engage patients is not well-understood. This knowledge gap results in frustrating barriers for decision-makers looking to draw transferable lessons to inform the design of patient engagement programs and processes. Coupled with challenges to the sustainability of health care and the need for innovative solutions, patient engagement has become central to improving both quality and delivery of services. This thesis is comprised of three independent studies that form an overarching program of research. The first study reports the results of a scoping review to understand how health systems are investing in building the capacity and ability of patients. In the second study, we build on the findings from the scoping review and a series of qualitative interviews to inform a provincial survey tool to understan...
Additional file 2. Ground Rules.
Data-charting (extraction) sheet. (XLSX 9 kb)
Table S1. Included study characteristics. (DOCX 48Â kb)
Appendix 1. PubMed search strategy. (DOCX 15Â kb)
Health Expectations, 2021
This is an open access article under the terms of the Creative Commons Attribution License, which... more This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
JAMA internal medicine, 2017
1 Ms. Tamara L. McCarron, Women in Science and Engineering Coordinator/SCIberMENTOR Program Admin... more 1 Ms. Tamara L. McCarron, Women in Science and Engineering Coordinator/SCIberMENTOR Program Administrator, University of Calgary, Geomatics Engineering, 2500 University Drive NW Calgary, Alberta, Canada T2N 1N4, tlmccarr@ucalgary.ca 2 Dr. Elizabeth Cannon, Professor Geomatics Engineering, University of Calgary, Geomatics Engineering, 2500 University Drive NW Calgary, Alberta, Canada T2N 1N4, cannon@geomatics.ucalgary.ca 3 Dr. S. C Wirasinghe, Dean of Engineering, University of Calgary, Geomatics Engineering, 2500 University Drive NW Calgary, Alberta, Canada T2N 1N4, wirasing@ucalgary.ca 4 Dr. M. P. Boorman, Dean of Science, University of Calgary, Geomatics Engineering, 2500 University Drive NW Calgary, Alberta, Canada T2N 1N4, mboorman@ucalgary.ca
Patient, Mar 15, 2024
Background There is evidence supporting the value of patient engagement (PE) in research to patie... more Background There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence. Methods We used a convergent mixed method design to guide the integration of our survey data and observation data to assess the influence of PE in two groups, comprising patient research partners (PRPs), clinicians, and researchers. A PRP led one group (PLG) and an academic researcher led the other (RLG). Both groups were given the same research question and tasked to design and conduct an inflammatory bowel disease (IBD)-related patient preference study. We administered validated evaluation tools at three points and observed PE in the two groups conducting the IBD study. Results PRPs in both groups took on many operational roles and influenced all stages of the IBD-related qualitative study: launch, design, implementation, and knowledge translation. PRPs provided more clarity on the study design, target population, inclusion-exclusion criteria, data collection approach, and the results. PRPs helped operationalize the project question, develop study material and data collection instruments, collect data, and present the data in a relevant and understandable manner to the patient community. The synergy of collaborative partnership resulted in two projects that were patient-centered, meaningful, understandable, legitimate, rigorous, adaptable, feasible, ethical and transparent, timely, and sustainable. Conclusion Collaborative and meaningful engagement of patients and researchers can influence all stages of qualitative research including design and approach, and outputs.
Journal of the Canadian Association of Gastroenterology, Dec 1, 2023
BMJ Open, Oct 31, 2023
Objective The objective of this study was to explore the outcomes of research engagement (patient... more Objective The objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research. Design We observed engagement in two groups comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. One group was led by a patient research partner (PLG, partner led group) and the other by an academic researcher (RLG, researcher led group). A semistructured guide and a set of critical outcomes of research engagement were used as a framework to ground our analysis. Setting The study was conducted online. Participants Patient research partners (n=5), researchers (n=5) and clinicians (n=4) participated in this study. Main outcome measures Transcripts of meetings, descriptive and reflective observation data of engagement during meetings and email correspondence between group members were analysed to identify the outcomes of PE. Results Both projects were patient-centred, collaborative, meaningful, rigorous, adaptable, ethical, legitimate, understandable, feasible, timely and sustainable. Patient research partners (PRPs) in both groups wore dual hats as patients and researchers and influenced project decisions wearing both hats. They took on advisory and operational roles. Collaboration seemed easier in the PLG than in the RLG. The RLG PRPs spent more time than their counterparts in the PLG sharing their experience with biologics and helping their group identify a meaningful project question. A formal literature review informed the design, project materials and analysis in the RLG, while the formal review informed the project materials and analysis in the PLG. A PRP in the RLG and the PLG lead leveraged personal connections to facilitate recruitment. The outcomes of both projects were meaningful to all members of the groups. Conclusions Our findings show that engagement of PRPs in research has a positive influence on the project design and delivery in the context of qualitative research in both the patient-led and researcher-led group.
BMC Palliative Care, Mar 7, 2018
Background: The aim of palliative care is to improve the quality of life of patients and families... more Background: The aim of palliative care is to improve the quality of life of patients and families through the prevention and relief of suffering. Frequently, patients may choose to receive palliative care in the home. The objective of this paper is to summarize the quality and primary outcomes measured within the palliative care in the home literature. This will synthesize the current state of the literature and inform future work.
Patient involvement in various aspects of healthcare, from improving healthcare quality to promot... more Patient involvement in various aspects of healthcare, from improving healthcare quality to promoting patient safety, has emerged as a critical priority, but understanding how best to engage patients is not well understood. This knowledge gap results in frustrating barriers for decision-makers looking to draw transferable lessons to inform the design of patient engagement programs and processes. Coupled with challenges to the sustainability of health care and the need for innovative solutions, patient engagement has become central to improving both quality and delivery of services. This thesis is comprised of three independent studies that form an overarching program of research. The first study reports the results of a scoping review to understand how health systems are investing in building the capacity and ability of patients. In the second study, we build on the findings from the scoping review and a series of qualitative interviews to inform a provincial survey tool to understand the motivations of individuals who chose to give their time and talents to health organizations. In the third study, we co-designed a framework for patient engagement, grounded in market choice behaviour theory and informed by the literature, a province-wide survey and four provincial stakeholder workshops. While significant research exists that highlights the motivations of the public who choose to participate in decision-making, a limited number of studies have explored these concepts within healthcare. As the roles of patient and family members in the context of healthcare decision-making continue to evolve, the importance of effective and sustainable engagement programs will become increasingly important. A deeper knowledge of patient motivations will not only create meaningful engagement opportunities for patients but will iii also enable health organizations to gain from the experience of these individuals. While further research is needed to support the engagement of diverse groups of stakeholders, the findings from this study have developed an understanding of how patients are motivated to make engagement decisions. This knowledge will help focus patient engagement efforts, thereby improving the efficiency and cost effectiveness of these programs, ensuring their relative sustainability.
JAMA Internal Medicine, Nov 1, 2017
BMJ Open, Feb 1, 2023
Objective To develop a set of patient and family engagement indicators (PFE-Is) for measuring eng... more Objective To develop a set of patient and family engagement indicators (PFE-Is) for measuring engagement in health system improvement for a Canadian provincial health delivery system through an evidence-based consensus approach. Design This mixed-method, multiphase project included: (1) identification of existing measures of patient and family engagement through a review of the literature and consultations with a diverse provincial council of patients, caregivers, community members and researchers. The Public and Patient Engagement Evaluation Tool (PPEET) was selected; (2) consultations on relevance, acceptability and importance with patient and family advisors, and staff members of Alberta Health Services' Strategic Clinical Networks. This phase included surveys and one-on-one semi-structured interviews aimed to further explore the use of PPEET in this context. Findings from the survey and interviews informed the development of PFE-Is; (3) a Delphi consensus process using a modified RAND/UCLA Appropriateness Method to identify and refine a core set of PFE-Is. Participants The consensus panel consisted of patients, family members, community representatives, clinicians, researchers and healthcare leadership. Results From an initial list of 33 evidence-based PFE-Is identified, the consensus process yielded 18 final indicators. These PFE-Is were grouped into seven themes: communication, comfort to contribute, support needed for engagement, impact and influence of engagement initiative, diversity of perspectives, respectful engagement, and working together indicators. Conclusions This group of final patient, family and health system leaders informed indicators can be used to measure and evaluate meaningful engagement in health research and system transformation. The use of these metrics can help to improve the quality of patient and family engagement to drive health research and system transformation.
Begell House, Contact Authors AZ References Books Journals Digital Library Home. Shopping cart ( ... more Begell House, Contact Authors AZ References Books Journals Digital Library Home. Shopping cart ( ). | Current Journal | All Website. Journal of Women and Minorities in Science and Engineering, To view the interactive menu, please click here to install the latest version of the Adobe Flash Player. Journals Books Begell Digital Library Submission. ISSN: 1072-8325 Print. ISSN: 1940-431X Online. You can order a single issue or an individual article ...
Patient involvement in various aspects of healthcare, from improving healthcare quality to promot... more Patient involvement in various aspects of healthcare, from improving healthcare quality to promoting patient safety, has emerged as a critical priority, but understanding how best to engage patients is not well-understood. This knowledge gap results in frustrating barriers for decision-makers looking to draw transferable lessons to inform the design of patient engagement programs and processes. Coupled with challenges to the sustainability of health care and the need for innovative solutions, patient engagement has become central to improving both quality and delivery of services. This thesis is comprised of three independent studies that form an overarching program of research. The first study reports the results of a scoping review to understand how health systems are investing in building the capacity and ability of patients. In the second study, we build on the findings from the scoping review and a series of qualitative interviews to inform a provincial survey tool to understan...
Additional file 2. Ground Rules.
Data-charting (extraction) sheet. (XLSX 9 kb)
Table S1. Included study characteristics. (DOCX 48Â kb)
Appendix 1. PubMed search strategy. (DOCX 15Â kb)
Health Expectations, 2021
This is an open access article under the terms of the Creative Commons Attribution License, which... more This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
JAMA internal medicine, 2017
1 Ms. Tamara L. McCarron, Women in Science and Engineering Coordinator/SCIberMENTOR Program Admin... more 1 Ms. Tamara L. McCarron, Women in Science and Engineering Coordinator/SCIberMENTOR Program Administrator, University of Calgary, Geomatics Engineering, 2500 University Drive NW Calgary, Alberta, Canada T2N 1N4, tlmccarr@ucalgary.ca 2 Dr. Elizabeth Cannon, Professor Geomatics Engineering, University of Calgary, Geomatics Engineering, 2500 University Drive NW Calgary, Alberta, Canada T2N 1N4, cannon@geomatics.ucalgary.ca 3 Dr. S. C Wirasinghe, Dean of Engineering, University of Calgary, Geomatics Engineering, 2500 University Drive NW Calgary, Alberta, Canada T2N 1N4, wirasing@ucalgary.ca 4 Dr. M. P. Boorman, Dean of Science, University of Calgary, Geomatics Engineering, 2500 University Drive NW Calgary, Alberta, Canada T2N 1N4, mboorman@ucalgary.ca