scholarly journals Barriers to and Recommendations for Research Recruitment of Individuals Affected by Serious Illness

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 168-168
Author(s):  
Anna Rahman ◽  
Jenna Giulioni ◽  
Alexis Coulourides Kogan ◽  
Susan Enguidanos ◽  
Valeria Cardenas
Keyword(s):  
Primary Care Physicians ◽  
Healthcare Research ◽  
Time Constraints ◽  
Research Recruitment ◽  
Privacy Concerns ◽  
Individual Interviews ◽  
Research Institution ◽  
Health Related Research ◽  
Health Related ◽  
Physician Recommendations

Abstract Researchers are encountering increasing challenges in recruiting participants for healthcare research. We conducted semi-structured individual interviews to identify participant barriers to research and recommendations for overcoming these challenges. We recruited 17 patients and eight caregivers who were approached to participate in a randomized control trial. We also recruited 31 primary care physicians. Using grounded theory, three researchers independently coded the transcripts and then met to compare codes and reconcile discrepancies. Themes from patient and caregiver interviews included time constraints, privacy concerns, lack of research familiarity, disconnect with research institution, self-perceived health status, and concerns with study randomization and repetitive questions. Physician-identified barriers focused on time constraints and study randomization. Patient and caregiver recommendations for study recruitment included various recruitment techniques. Physician recommendations were related to incentives. Although patients and caregivers prefer that their physicians recruit them for health-related research studies, physicians identified time constraints as a barrier to research involvement.

scholarly journals EHR phenotyping for research recruitment: Researcher, IRB, and physician perspectives on approaches to contacting patients

2020 ◽  
pp. 1-7
Author(s):  
Laura M. Beskow ◽  
Kathleen M. Brelsford ◽  
Catherine M. Hammack-Aviran
Keyword(s):  
Primary Care Physicians ◽  
Clinical Care ◽  
Research Recruitment ◽  
Stakeholder Perspectives ◽  
Institutional Review ◽  
Opt Out ◽  
Control Research ◽  
Health Related Research ◽  
Health Related ◽  
Research Efficiency

ABSTRACT Introduction: Failure to achieve accrual goals is a common problem in health-related research. Electronic health records represent a promising resource, offering the ability to identify a precisely defined cohort of patients who meet inclusion/exclusion criteria. However, challenges associated with the recruitment process remain and institutional policies vary. Methods: We interviewed researchers, institutional review board chairs, and primary care physicians in North Carolina and Tennessee. Questions focused on strategies for initiating contact with potentially eligible patients, as well as recruitment letters asking recipients to opt in versus opt out of further communication. Results: When we asked about initiating contact with prospective participants, qualitative themes included trust, credibility, and established relationships; research efficiency and validity; privacy and autonomy; the intersection between research and clinical care; and disruption to physician–researcher and physician–patient relationships. All interviewees said it was acceptable for researchers to contact patients through their physicians; most said it was acceptable for researchers to contact patients directly. Over half chose contact through physicians as more appropriate. Regarding recruitment letters, qualitative themes included the quality of the participant pool; privacy and control; research efficiency and representativeness; and patients’ opportunity to make their own decisions. All interviewees said asking recipients to opt in to further communication was acceptable; nearly all said opt out was acceptable. Similar proportions chose each approach as more appropriate. Conclusions: Comparing these results to our previous research with patients reveals potential differences in stakeholder perspectives. We offer suggestions for developing balanced approaches that respect patients and facilitate the advancement of science.

scholarly journals Patient and physician perspectives on engaging in palliative and healthcare trials: a qualitative descriptive study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Jenna Giulioni ◽  
Alexis Coulourides Kogan ◽  
Susan Enguidanos
Keyword(s):  
Financial Incentives ◽  
Controlled Trial ◽  
Qualitative Interviews ◽  
Healthcare Providers ◽  
Healthcare Research ◽  
Time Constraints ◽  
Research Recruitment ◽  
Home Based ◽  
Seriously Ill Patients ◽  
Research Studies

Abstract Background Researchers are encountering increasing challenges in recruiting participants for palliative and healthcare research. This paper aims to understand challenges to and methods for engaging physicians and seriously ill patients and their caregivers in research studies. Methods Between October 2019 to July 2020, we conducted qualitative interviews with 25 patients, proxies, and caregivers participants who were eligible for a randomized controlled trial of home-based palliative care and 31 physicians from participating accountable care organizations. Using thematic analysis, we analyzed participants’ responses to identify concepts and key ideas within the text. From these initial concepts, core themes around barriers to research and preferred research recruitment approaches were generated. Results Themes from patient and caregiver interviews included time constraints, privacy concerns, lack of research familiarity, disconnect with research institution, self-perceived health status, and concerns with study randomization. Physician-identified barriers focused on time constraints and study randomization. Patient and caregiver recommendations for study recruitment included in-person recruitment, recruitment at healthcare providers’ offices, recruitment via mail, additional study information, and frequent calls. Physician recommendations were related to placement of flyers at clinics, financial incentives, and formal events. Conclusions Findings demonstrated that although patients and caregivers prefer that their physicians recruit them for health-related research studies, physicians identified time constraints as a consistent barrier to research involvement.

Research Ethics Committees in the Field of Health-Related Human Research — A European Perspective and the Case of Austria

2014 ◽  
Vol 21 (4) ◽  
pp. 387-400
Author(s):  
Verena Stühlinger ◽  
Michael Hackl
Keyword(s):  
Research Ethics ◽  
Ethics Committees ◽  
Epidemiological Studies ◽  
Healthcare Research ◽  
Institutional Review Boards ◽  
Research Ethics Committees ◽  
Research Committee ◽  
Institutional Review ◽  
Health Related Research ◽  
Health Related

Human subject abuse and patient harm through medical research have led to the establishment of Institutional Review Boards (irbs or Research Ethics Committees (recs)), who independently scrutinise research protocols. In the field of trials with medicinal products as well as trials testing medical devices, an obligation for submission prior to realisation is granted within Europe through European directives. However, regulation of other fields of health-related research, e.g., psychological trials, public health and epidemiological studies or healthcare research is the responsibility of eu Member States; and European laws differ widely. The article gives an overview of European regulations in the field of rec review requirements, critically analyses Austrian legislation in this field and describes an institutional solution for legislative gaps in Austria — the Research Committee for Scientific and Ethical Questions (rcseq). Finally, important European initiatives for the future are pointed out.

Identifying Perspectives of Health in Adults With Intellectual Disability Through Engagement in Participatory Research

Inclusion ◽  
2013 ◽  
Vol 1 (3) ◽  
pp. 147-163 ◽  
Author(s):  
Beth Cardell
Keyword(s):  
Health Promotion ◽  
Intellectual Disability ◽  
Population Health ◽  
Participatory Research ◽  
Skill Development ◽  
Related Research ◽  
Individual Interviews ◽  
Health Related Research ◽  
Health Related

Abstract The purpose of this paper is to present the contributions adults with intellectual disability can make to health-related research in an effort to encourage the inclusion of this population in research. Photovoice was used to develop collaboration between the researcher and a group of adults with intellectual disability. In addition to individual interviews and observations, the participants completed a photograph assignment aimed at identifying things that are good or bad for health. Four themes emerged from this study: defining health, feeling connected, having something to do, and being part of the community. Additionally, insight was gleaned on promoting health in this population. Health promotion curricula need to include skill development and support building along with this population's strengths, interests, and context.

Dissemination and Implementation Research in Health

2017 ◽  
Keyword(s):  
Evidence Base ◽  
Dissemination And Implementation ◽  
Evidence Based ◽  
Collaborative Partnerships ◽  
Social Service Agencies ◽  
Effective Interventions ◽  
Health Related Research ◽  
Health Related ◽  
Dissemination And Implementation Research ◽  
Policies And Programs

Fifteen to twenty years is how long it takes for the billions of dollars of health-related research to translate into evidence-based policies and programs suitable for public use. Over the past 15 years, an exciting science has emerged that seeks to narrow the gap between the discovery of new knowledge and its application in public health, mental health, and health care settings. Dissemination and implementation (D&I) research seeks to understand how to best apply scientific advances in the real world, by focusing on pushing the evidence-based knowledge base out into routine use. To help propel this crucial field forward, leading D&I scholars and researchers have collaborated to put together this volume to address a number of key issues, including: how to evaluate the evidence base on effective interventions; which strategies will produce the greatest impact; how to design an appropriate study; and how to track a set of essential outcomes. D&I studies must also take into account the barriers to uptake of evidence-based interventions in the communities where people live their lives and the social service agencies, hospitals, and clinics where they receive care. The challenges of moving research to practice and policy are universal, and future progress calls for collaborative partnerships and cross-country research. The fundamental tenet of D&I research—taking what we know about improving health and putting it into practice—must be the highest priority. This book is nothing less than a roadmap that will have broad appeal to researchers and practitioners across many disciplines.

scholarly journals Life-Changing Experiences of Mothers with School-Age Children during the COVID-19 Pandemic: Focusing on Their Health Risk Perceptions and Health-Related Behaviors

2021 ◽  
Vol 18 (9) ◽  
pp. 4523
Author(s):  
Hye Jin Yoo ◽  
JaeLan Shim ◽  
Namhee Kim
Keyword(s):  
Health Risk ◽  
Risk Perceptions ◽  
Qualitative Content Analysis ◽  
School Age Children ◽  
School Age ◽  
Individual Interviews ◽  
The Family ◽  
Health Related Behaviors ◽  
Health Related ◽  
Prevention Methods

This study aimed to explore health risk perceptions, changes in health-related behaviors, and life experiences of mothers with school-age children during the early coronavirus disease (COVID-19) pandemic. Data were collected between 16 July and 10 September 2020, by individual interviews and analyzed through qualitative content analysis. After the twelve participants’ experiences were analyzed, four themes and ten sub-themes were derived. The four themes were: “Struggling to identify the substance of COVID-19,” “Taking the initiative to protect the health of the family,” “Frustrated by the brutal reality of no end in sight,” and “Trying to adjust wisely to an inevitable new lifestyle.” The findings suggest that while the world remains in an ongoing battle with COVID-19, national health institutions should prepare a health education system for specific infection prevention methods that can be practiced by individuals in daily life.

Best Practices for Meta-Reviews in Physical Activity and Health Research: Insights From the Physical Activity Guidelines for Americans Advisory Committee Scientific Report

2021 ◽  
pp. 1-9
Author(s):  
Linda S. Pescatello ◽  
Emily A. Hennessy ◽  
Peter T. Katzmarzyk ◽  
William E. Kraus ◽  
Anne F. Fish ◽  
...  
Keyword(s):  
Physical Activity ◽  
Advisory Committee ◽  
Best Practice ◽  
Physical Activity Guidelines ◽  
Health Related Research ◽  
Health Related ◽  
Scientific Report ◽  
Synthesis Methodology ◽  
High Level ◽  
Meta Analyses

Background: Systematic reviews (SRs) and meta-analyses (MAs) have proliferated with a concomitant increase in reviews of SRs/MAs or “meta-reviews” (MRs). As uncovered by the 2018 US Physical Activity Guidelines Advisory Committee (PAGAC), there is a paucity of best practice guidance on MRs on physical activity health-related research. This manuscript aims to fill this gap. Methods: In total, the PAGAC conducted 38 literature searches across 3 electronic databases and triaged 20,838 titles, 4913 abstracts, and 2139 full texts from which 1130 articles qualified for the PAGAC Scientific Report. Results: During the MR process, the following challenges were encountered: (1) if the SR/MA authors had limited experience in synthesis methodology, they likely did not account for risk of bias in the conclusions they reached; (2) many SRs/MAs reviewed the same primary-level studies; (3) many SRs/MAs failed to disclose effect modifier analyses; (4) source populations varied; (5) physical activity exposures were nonstandardized; and (6) dose–response effects or effect modification of the physical activity exposure could not be identified. Conclusions: Using examples from the PAGAC Scientific Report, we provide (1) a high-level introduction to MRs; (2) recommended steps in conducting a MR; (3) challenges that can be encountered; and (4) guidance in addressing these challenges.

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