Critical Aspects of a Sustainable Clinical Research Program in the Community-Based Oncology Practice

2019 ◽  
pp. 176-184 ◽  
Author(s):  
Jennifer L. Ersek ◽  
Stephanie L. Graff ◽  
Francis P. Arena ◽  
Neelima Denduluri ◽  
Edward S. Kim
Keyword(s):  
Clinical Research ◽  
Patient Care ◽  
Health Care Providers ◽  
Research Program ◽  
Improve Patient Care ◽  
Care Providers ◽  
Community Based ◽  
Technological Infrastructure ◽  
Community Based Research ◽  
Research Programs

Increasing enrollment into clinical trials is a top priority across the field of oncology. Because the vast majority of those afflicted with cancer receive their care in the community, creating strong clinical research programs in the community-based setting is important. This article comprehensively outlines the most important elements of creating and sustaining a successful community-based research program. Establishing a clear mission and defining the scope of the research program in collaboration with key physicians and administrative leadership are critical to success. Standard operating procedures should detail operational processes. Ensuring sound financial planning and protected physician time are crucial for a healthy program. Providing mentorship opportunities to investigators and other team members will provide necessary guidance for junior investigators and long-term program stability. Prioritizing provider and patient volunteer engagement through education and awareness will potentially improve enrollment and research ownership. Incorporating administrative and clinical research staff and health care providers, including physicians, advanced practice providers, and pharmacists, will result in a multidisciplinary and unified approach and may also promote research as a routine part of patient care. Regular safety and scientific meetings will reduce regulatory complications and, most importantly, improve patient care. Other keys to a successful program include establishing a diverse trial portfolio, collaboration between different institutions, and ensuring appropriate technological infrastructure. Serial programmatic review provides opportunities to refine suboptimal practices and recognize successful strategies. Community-based research programs are critical to improve access to optimal cancer care. Implementation of successful programs is possible with a collaborative and multidisciplinary approach.

scholarly journals Assessing Clinical Trial–Associated Workload in Community-Based Research Programs Using the ASCO Clinical Trial Workload Assessment Tool

2016 ◽  
Vol 12 (5) ◽  
pp. e536-e547 ◽  
Author(s):  
Marjorie J. Good ◽  
Patricia Hurley ◽  
Kaitlin M. Woo ◽  
Connie Szczepanek ◽  
Teresa Stewart ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Research ◽  
Research Program ◽  
Assessment Tool ◽  
Cancer Control ◽  
Community Based ◽  
Community Based Research ◽  
Research Programs ◽  
Number Of Patients ◽  
Clinical Trial Accrual

Purpose: Clinical research program managers are regularly faced with the quandary of determining how much of a workload research staff members can manage while they balance clinical practice and still achieve clinical trial accrual goals, maintain data quality and protocol compliance, and stay within budget. A tool was developed to measure clinical trial–associated workload, to apply objective metrics toward documentation of work, and to provide clearer insight to better meet clinical research program challenges and aid in balancing staff workloads. A project was conducted to assess the feasibility and utility of using this tool in diverse research settings. Methods: Community-based research programs were recruited to collect and enter clinical trial–associated monthly workload data into a web-based tool for 6 consecutive months. Descriptive statistics were computed for self-reported program characteristics and workload data, including staff acuity scores and number of patient encounters. Results: Fifty-one research programs that represented 30 states participated. Median staff acuity scores were highest for staff with patients enrolled in studies and receiving treatment, relative to staff with patients in follow-up status. Treatment trials typically resulted in higher median staff acuity, relative to cancer control, observational/registry, and prevention trials. Industry trials exhibited higher median staff acuity scores than trials sponsored by the National Institutes of Health/National Cancer Institute, academic institutions, or others. Conclusion: The results from this project demonstrate that trial-specific acuity measurement is a better measure of workload than simply counting the number of patients. The tool was shown to be feasible and useable in diverse community-based research settings.

ASCO research program quality assessment tool: Basics for a quality community-based research site.

2014 ◽  
Vol 32 (30_suppl) ◽  
pp. 97-97
Author(s):  
Patricia A. Hurley ◽  
Renee Yvonne Smith ◽  
Nicholas J. Robert
Keyword(s):  
Quality Assurance ◽  
Quality Assessment ◽  
Research Program ◽  
Quality Assurance Program ◽  
Internal Quality ◽  
Community Based ◽  
Community Based Research ◽  
Minimum Standards ◽  
Research Programs ◽  
Internal Quality Assurance

97 Background: In 2008, ASCO published a statement to identify minimum standards and exemplary attributes of clinical trial sites. Recommendations were made to assist with the development and implementation of high-quality research programs. Based on feedback from an ASCO needs assessment survey, ASCO’s Community Research Forum (CRF) sought to develop a tool to help community-based research sites exceed the minimum standards of conducting clinical research, and to identify important components for an internal quality assurance program. Methods: A tool was developed to incorporate elements of ASCO publications on minimal standards and exemplary attributes of research sites. The tool was designed to assist community-based research sites with the development and implementation of an internal quality assurance program. A checklist was also developed to help sites easily conduct an assessment of their program. Community-based researchers provided feedback on the tool’s content and utilization. Feedback was incorporated and the tool was released for widespread use in March 2014. Results: The tool was very well received by reviewers. All reviewers indicated that the level of detail of the tool was sufficient; 94% indicated that it presented realistic expectations, in terms of resources required to implement; and 81% indicated that it would be valuable for conducting a quality assessment of their research program. As of July 2014, the tool was downloaded by over 150 practices from 8 different countries and early feedback continued to be favorable, particularly from small and/or new research programs. Conclusions: Many community-based research programs do not have the resources to support an effective quality assurance program and rely heavily on external audits. The ASCO Research Program Quality Assessment Tool provides self-directed continual process improvement to help community-based research sites create an internal quality assurance program and exceed minimum standards of conducting clinical research. The CRF will learn more from users of the tool about the quality of research programs and processes, and key quality metrics. The tool is available for download at www.asco.org/communityresearchforum.

Increasing Awareness of the All of Us Research Program in Latino Communities

2018 ◽  
Vol 16 (4) ◽  
pp. 168-173
Author(s):  
Norma G. Cuellar ◽  
Elizabeth Aquino ◽  
Sara Cruet Barreto ◽  
Grace Grau ◽  
Jeneva Gularte-Rinaldo ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Research Program ◽  
The United States ◽  
Care Providers ◽  
Community Based ◽  
Community Based Education ◽  
Program Success ◽  
Diverse Backgrounds ◽  
Latino Communities

Introduction: The All of Us Research Program is funded by the National Institutes of Health. The aim of the program is to gather data from at least 1 million people of diverse backgrounds living in the United States to accelerate research and improve health. The purpose of this article is to discuss the collaboration of the All of Us Research Program and the National Association of Hispanic Nurses (NAHN) to increase awareness of the All of Us Research Program in Latino communities. Method: A community-based education approach by NAHN chapters across the country was used. The Sprint 1 grant was funded to increase awareness in health care providers of Latino communities. The Sprint 2 grant was funded to increase awareness in Latino communities. Results: A total of 8 NAHN chapters were selected to disseminate the All of Us Research Program information. These initiatives reached more than 156,000 health care providers and the chapters participated in 31 community-based activities across the country reaching thousands of Latinos. Discussion: The collaboration between the All of Us Research Program and NAHN was instrumental in disseminating information to the Latino population. Developing trust in Latino communities is an essential component of program success.

scholarly journals A consult service to support and promote community-based research: Tracking and evaluating a community-based research consult service

2016 ◽  
Vol 1 (1) ◽  
pp. 33-39
Author(s):  
C. M. Pelfrey ◽  
K. D. Cain ◽  
M. E. Lawless ◽  
E. Pike ◽  
A. R. Sehgal
Keyword(s):  
Health Care Providers ◽  
Evaluation System ◽  
Expert Knowledge ◽  
Care Providers ◽  
Consult Service ◽  
Community Members ◽  
Community Based ◽  
Knowledge Community ◽  
Community Based Research ◽  
Research Outcomes

PurposeThis study describes the design, operation, and evaluation of a community-based research (CBR) consult service within the setting of a Clinical and Translational Science Award (CTSA) institution. To our knowledge, there are no published evaluations of a CBR consult service at a CTSA hub.MethodsA CBR consult service was created to support faculty, health-care providers/research coordinators, trainees, community-based organizations, and community members. A framework was developed to assess the stages of client engagement and to foster clear articulation of client needs and challenges. A developmental evaluation system was integrated with the framework to track progress, store documents, continuously improve the consult service, and assess research outcomes.ResultsThis framework provides information on client numbers, types, services used, and successful outreach methods. Tracking progress reveals reasons that prevent clients from completing projects and facilitates learning outcomes relevant to clients and funding agencies. Clients benefit from the expert knowledge, community connections, and project guidance provided by the consult service team, increasing the likelihood of study completion and achieving research outcomes.ConclusionThis study offers a framework by which CTSA institutions can expand their capacity to conduct and evaluate CBR while addressing challenges that inhibit community engagement.

Translating Evidence-Based Interventions Into Practice

2011 ◽  
Vol 12 (6_suppl_1) ◽  
pp. 9S-19S ◽  
Author(s):  
Meera Viswanathan ◽  
Linda Lux ◽  
Kathleen N. Lohr ◽  
Tammeka Swinson Evans ◽  
Lucia Rojas Smith ◽  
...  
Keyword(s):  
Health Care Providers ◽  
System Integration ◽  
Pediatric Asthma ◽  
Evidence Based ◽  
Extensive Literature ◽  
Care Providers ◽  
Planning Period ◽  
Community Based ◽  
Asthma Morbidity ◽  
Effective Interventions

Pediatric asthma is a multifactorial disease, requiring complex, interrelated interventions addressing children, families, schools, and communities. The Merck Childhood Asthma Network, Inc. (MCAN) is a nonprofit organization that provides support to translate evidence-based interventions from research to practice. MCAN developed the rationale and vision for the program through a phased approach, including an extensive literature review, stakeholder engagement, and evaluation of funding gaps. The analysis pointed to the need to identify pediatric asthma interventions implemented in urban U.S. settings that have demonstrated efficacy and materials for replication and to translate the interventions into wider practice. In addition to this overall MCAN objective, specific goals included service and system integration through linkages among health care providers, schools, community-based organizations, patients, parents, and other caregivers. MCAN selected sites based on demonstrated ability to implement effective interventions and to address multiple contexts of pediatric asthma prevention and management. Selected MCAN program sites were mature institutions or organizations with significant infrastructure, existing funding, and the ability to provide services without requiring a lengthy planning period. Program sites were located in communities with high asthma morbidity and intended to integrate new elements into existing programs to create comprehensive care approaches.

scholarly journals Issues Associated With the Management and Governance of Sensor Data and Information to Assist Aging in Place: Focus Group Study With Health Care Professionals (Preprint)

2020 ◽  
Author(s):  
Inga Hunter ◽  
Phoebe Elers ◽  
Caroline Lockhart ◽  
Hans Guesgen ◽  
Amardeep Singh ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Care ◽  
Older People ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
Information Needs ◽  
Sensor Data ◽  
Care Providers ◽  
Community Based ◽  
Age In Place

BACKGROUND Smart home and telemonitoring technologies have often been suggested to assist health care workers in supporting older people to age in place. However, there is limited research examining diverse information needs of different groups of health care workers and their access to appropriate information technologies. OBJECTIVE The aim of this study was to investigate the issues associated with using technologies that connect older people to their health care providers to support aging in place and enhance older people’s health and well-being. METHODS Seven focus group discussions were conducted comprising 44 health care professionals who provided clinic-based or in-home services to community-dwelling older people. Participants were asked about their information needs and how technology could help them support older people to age in place. The recordings of the sessions were transcribed and thematically analyzed. RESULTS The perspectives varied between the respondents who worked in primary care clinics and those who worked in community-based services. Three overarching themes were identified. The first theme was “access to technology and systems,” which examined the different levels of technology in use and the problems that various groups of health care professionals had in accessing information about their patients. Primary care professionals had access to good internal information systems but they experienced poor integration with other health care providers. The community-based teams had poor access to technology. The second theme was “collecting and sharing of information,” which focused on how technology might be used to provide them with more information about their patients. Primary care teams were interested in telemonitoring for specific clinical indicators but they wanted the information to be preprocessed. Community-based teams were more concerned about gaining information on the patients’ social environment. The third theme was that all respondents identified similar “barriers to uptake”: cost and funding issues, usability of systems by older people, and information security and privacy concerns. CONCLUSIONS The participants perceived the potential benefits of technologies, but they were concerned that the information they received should be preprocessed and integrated with current information systems and tailored to the older people’s unique and changing situations. Several management and governance issues were identified, which needed to be resolved to enable the widespread integration of these technologies into the health care system. The disconnected nature of the current information architecture means that there is no clear way for sensor data from telemonitoring and smart home devices to be integrated with other patient information. Furthermore, cost, privacy, security, and usability barriers also need to be resolved. This study highlights the importance and the complexity of management and governance of systems to collect and disseminate such information. Further research into the requirements of all stakeholder groups and how the information can be processed and disseminated is required.

scholarly journals Examining the role of MEDLINE as a patient care information resource: an analysis of data from the Value of Libraries study

2017 ◽  
Vol 105 (4) ◽  
Author(s):  
Kathel Dunn ◽  
Joanne Gard Marshall ◽  
Amber L. Wells ◽  
Joyce E. B. Backus
Keyword(s):  
Health Care ◽  
Adverse Events ◽  
Patient Care ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
Information Resources ◽  
Information Resource ◽  
Care Providers ◽  
Other Information

Objective: This study analyzed data from a study on the value of libraries to understand the specific role that the MEDLINE database plays in relation to other information resources that are available to health care providers and its role in positively impacting patient care.Methods: A previous study on the use of health information resources for patient care obtained 16,122 responses from health care providers in 56 hospitals about how providers make decisions affecting patient care and the role of information resources in that process. Respondents indicated resources used in answering a specific clinical question from a list of 19 possible resources, including MEDLINE. Study data were examined using descriptive statistics and regression analysis to determine the number of information resources used and how they were used in combination with one another.Results: Health care professionals used 3.5 resources, on average, to aid in patient care. The 2 most frequently used resources were journals (print and online) and the MEDLINE database. Using a higher number of information resources was significantly associated with a higher probability of making changes to patient care and avoiding adverse events. MEDLINE was the most likely to be among consulted resources compared to any other information resource other than journals.Conclusions: MEDLINE is a critical clinical care tool that health care professionals use to avoid adverse events, make changes to patient care, and answer clinical questions.

scholarly journals Issues Associated With the Management and Governance of Sensor Data and Information to Assist Aging in Place: Focus Group Study With Health Care Professionals

10.2196/24157 ◽  
2020 ◽  
Vol 8 (12) ◽  
pp. e24157
Author(s):  
Inga Hunter ◽  
Phoebe Elers ◽  
Caroline Lockhart ◽  
Hans Guesgen ◽  
Amardeep Singh ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Care ◽  
Older People ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
Information Needs ◽  
Sensor Data ◽  
Care Providers ◽  
Community Based ◽  
Age In Place

Background Smart home and telemonitoring technologies have often been suggested to assist health care workers in supporting older people to age in place. However, there is limited research examining diverse information needs of different groups of health care workers and their access to appropriate information technologies. Objective The aim of this study was to investigate the issues associated with using technologies that connect older people to their health care providers to support aging in place and enhance older people’s health and well-being. Methods Seven focus group discussions were conducted comprising 44 health care professionals who provided clinic-based or in-home services to community-dwelling older people. Participants were asked about their information needs and how technology could help them support older people to age in place. The recordings of the sessions were transcribed and thematically analyzed. Results The perspectives varied between the respondents who worked in primary care clinics and those who worked in community-based services. Three overarching themes were identified. The first theme was “access to technology and systems,” which examined the different levels of technology in use and the problems that various groups of health care professionals had in accessing information about their patients. Primary care professionals had access to good internal information systems but they experienced poor integration with other health care providers. The community-based teams had poor access to technology. The second theme was “collecting and sharing of information,” which focused on how technology might be used to provide them with more information about their patients. Primary care teams were interested in telemonitoring for specific clinical indicators but they wanted the information to be preprocessed. Community-based teams were more concerned about gaining information on the patients’ social environment. The third theme was that all respondents identified similar “barriers to uptake”: cost and funding issues, usability of systems by older people, and information security and privacy concerns. Conclusions The participants perceived the potential benefits of technologies, but they were concerned that the information they received should be preprocessed and integrated with current information systems and tailored to the older people’s unique and changing situations. Several management and governance issues were identified, which needed to be resolved to enable the widespread integration of these technologies into the health care system. The disconnected nature of the current information architecture means that there is no clear way for sensor data from telemonitoring and smart home devices to be integrated with other patient information. Furthermore, cost, privacy, security, and usability barriers also need to be resolved. This study highlights the importance and the complexity of management and governance of systems to collect and disseminate such information. Further research into the requirements of all stakeholder groups and how the information can be processed and disseminated is required.

scholarly journals Understanding How to Support Family Caregivers of Seniors with Complex Needs

2017 ◽  
Vol 20 (2) ◽  
pp. 75-84 ◽  
Author(s):  
Lesley Charles ◽  
Suzette Brémault-Phillips ◽  
Jasneet Parmar ◽  
Melissa Johnson ◽  
Lori-Ann Sacrey
Keyword(s):  
Health Care ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Research Priorities ◽  
Care Providers ◽  
Community Based ◽  
Caregiver Support ◽  
Complex Needs ◽  
Participant Engagement

Purpose of the StudyThe purpose of this study was to describe the experiences and challenges of supporting family caregivers of seniors with complex needs and to outline support strategies and research priorities aimed at supporting them.Design and MethodsA CIHR-funded, two-day conference entitled “Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes” was held. An integrated knowledge translation approach guided this planning conference. Day 1 included presentations of research evidence, followed by participant engagement Qualitative data was collected regarding facilitators, barriers/gaps, and recommendations for the provisionof caregiver supports. Day 2 focused on determination of research priorities.ResultsIdentified facilitators to the provision of caregiver support included accessibility of health-care and community-based resources, availability of well-intended health-care providers, and recognition of caregivers by the system. Barriers/gaps related to challenges with communication, access to information, knowledge of what is needed, system navigation, access to financial resources, and current policies. Recommendations regarding caregiver services and research revolved around assisting caregivers to self-identify and seek support, formalizing caregiver supports, centralizing resources, making system navigation available, and preparing the next generation for caregiving.Implication A better understanding of the needs of family caregivers and ways to support them is critical to seniors’ health services redesign.

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