Partnering patients, caregivers, and basic scientists: an engagement model that fosters patient- and family-centered research culture

Ketcher, Dana; Bidelman, Anne; Le, Liem Q.; Otto, Amy K.; Lester, Daniel; Amtmann-Beuttner, Kim K.; Gonzalez, Brian D.; Wright, Kenneth L.; Vadaparampil, Susan T.; Reblin, Maija; Lau, Eric

doi:10.1016/j.trsl.2020.07.013

Cited by 5 publications

(4 citation statements)

References 26 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Solutions that may decrease or eliminate barriers to scientists engaging with the community have been identified in other research, such as training scientists [ 1 , 3 , 4 ], training community partners [ 3 , 9 ], starting engagement early in the research process [ 3 , 9 ], and creating forums for discussions between patients and scientists [ 3 , 4 ]. We argue that this framework can assist with the development of multi-level solutions to barriers that meet the local needs and context within their catchment area.…”

Section: Discussionmentioning

confidence: 99%

A framework for building comprehensive cancer center’s capacity for bidirectional engagement

Trapl,

Koopman Gonzalez,

Austin

2024

Cancer Causes Control

View full text Add to dashboard Cite

Purpose Community engagement has benefits for cancer centers’ work and for its researchers. This study examined the experiences and perceptions of community engagement by members of the Case Comprehensive Cancer Center (Case CCC) to create and implement a framework to meet the needs of the entire cancer center. Methods This study included three phases: 1) Semi-structured interviews with 12 researchers from a basic science program to identify needs and suggestions for the support of community engagement; 2) Preliminary interview results informed the development of a survey of 86 cancer center members’ about their awareness of and readiness to integrate community outreach and engagement into their research; and 3) The Case CCC Office of Community Outreach and Engagement reviewed the results from phases 1 and 2 to develop and then utilize a framework of engagement opportunities. Results In the interviews and surveys, cancer center members recognized the importance of community engagement and expressed an interest in participating in COE-organized opportunities for bidirectional engagement. While participation barriers include communication issues, limited awareness of opportunities, and competing priorities, members were open to learning new skills, changing approaches, and utilizing services to facilitate engagement. The framework outlines engagement opportunities ranging from high touch, low reach to low touch, and high reach and was used to develop specific services. Conclusion This study identified varying needs around community engagement using an approach aimed at understanding the perspectives of a community of scientists. Implementing the framework enables reaching scientists in different ways and facilitates scientists’ recognition of and engagement with opportunities.

show abstract

Section: Discussionmentioning

confidence: 99%

A framework for building comprehensive cancer center’s capacity for bidirectional engagement

Trapl,

Koopman Gonzalez,

Austin

2024

Cancer Causes Control

View full text Add to dashboard Cite

show abstract

“…Innovative patient‐researcher forums promote community‐engaged research, improve communication, and provide compassionate care. Ketcher and colleagues report, “When researchers understand the patient and caregiver clinical experience, they are better able to target research questions to address the key clinical needs that are most relevant to patients.” 42 Patients and families learn more about the research at a basic science level, and researchers learn more about the patient journey by putting “a face to the research every day and helping to humanize the work being done.” 42 …”

Section: Figurementioning

confidence: 99%

Rhoads Research Lecture—Reflections from a clinician scientist: The power of patient voice

Winkler

2022

J Parenter Enteral Nutr

View full text Add to dashboard Cite

Qualitative research is a scientific method that systematically examines a phenomenon with the purpose of understanding and describing human experiences, exploring meanings and patterns, and illuminating the patient's lived experience. The Rhoads Research Lecture will highlight the power of patient voice and its importance to clinicians and researchers in addressing key clinical needs that are most relevant to patients receiving nutrition support. The subjective experience of patients who are dependent on home parenteral nutrition (HPN) will be shared, including how patients view HPN, define their quality of life (QOL), and describe the meaning of food in the context of being intravenously fed. As a result of these exploratory studies, the HPN patient‐reported outcome questionnaire (HPN‐PROQ) was developed and validated. Incorporating the HPN‐PROQ in practice empowers patients to identify and communicate QOL and HPN therapy goals and clinicians to delve deeper in the provision of holistic and empathetic care.

show abstract

“…In medical and nursing sciences the concept of collaboration has been highlighted as valuable and might contribute to building trust in the relationships between patients and relatives and the healthcare professions (12,13). Positive outcomes of collaboration are quality of care, patient safety, and making it easier for the patient to gain an overview of his/her care process (14,15). Previous studies indicate that care collaboration in healthcare seems to be considered highly valuable in principle, and that older adults and caregiver's want to be actively engaged in a dialogue regarding care (16), but that collaboration is di cult to achieve in all situations in everyday care (17).…”

Section: Introductionmentioning

confidence: 99%

Obstacles to and opportunities for care collaboration through the utilization of an effective preventive care process for frail older adults: A study protocol for a mixed methods study design.

Boström

Ranada

Wijk

et al. 2023

Preprint

View full text Add to dashboard Cite

Background: The gap between the groups in society experiencing good health and those not is increasing. Frail older adults are among the most vulnerable groups. Malnutrition, poor oral health, pressure ulcers and falls are common problems increasing the risk of hospitalization or admission to residential care facilities. An effective preventive care process is therefore needed to prevent such adverse events. Interprofessional care collaboration between the teams in residential care facilities, home help care, primary care, and hospital care is described as being prerequisite for an effective, safe, and effective preventive care process. However, the way in which thisprocess is carried out across Sweden’s municipalities varies. There is also a need to understand how managers in elderly care, interprofessional teams, and older adults themselves perceive how well the process of care collaboration functions. The protocol outlined here describes the design of a study aimed at exploring factors that constitute obstacles to and opportunities for care collaboration within and between different care providers through the utilization of an effective preventive care process for frail older adults in Sweden, based on the quality register Senior alert. Method: A convergent mixed methods study design will be used combining quantitative (quality registers and open data) and qualitative data (practice-based semi structural interviews and focus group interviews with key informants at various organisational levels in elderly care). The results will provide the foundation for the creation of a model for an effective preventive care process for frail older adults, including improved care collaboration, which will be tested in a pilot study. Discussion: Frail older adults face a high risk of negative events and hospitalization, which in turn leads to increased healthcare costs and decreased quality of life. There is a knowledge gap with regard to the obstacles to and opportunities for an effective preventive care process regarding these negative events. To increase patient safety and provide equitable care for frail older adults, good collaboration between care providers and the use of quality registers might be of importance.

show abstract

Partnering patients, caregivers, and basic scientists: an engagement model that fosters patient- and family-centered research culture

Cited by 5 publications

References 26 publications

A framework for building comprehensive cancer center’s capacity for bidirectional engagement

A framework for building comprehensive cancer center’s capacity for bidirectional engagement

Rhoads Research Lecture—Reflections from a clinician scientist: The power of patient voice

Obstacles to and opportunities for care collaboration through the utilization of an effective preventive care process for frail older adults: A study protocol for a mixed methods study design.

Contact Info

Product

Resources

About