Types Of Health Research Research Articles

Characterizing Canadian funded partnered health research projects between 2011 and 2019: a retrospective analysis

Background and AimsInvolving research users in collaborative research approaches may increase the relevance and utility of research findings. Our primary objectives were to (i) identify and describe characteristics of Canadian federally and provincially funded health research projects that included research users and were funded between 2011 and 2019; (ii) explore changes over time; and (iii) compare characteristics between funder required and optional partnerships.MethodsRetrospective analysis. Inclusion criteria were projects that included research users. We analyzed publicly available project variables, and coded field and type of research using established classification systems. We summarized data with descriptive statistics and compared variables across three funding year blocks and partnership requirement status.ResultsWe identified 1153 partnered health research projects, representing 137 fields of research and 37 types of research categories. Most projects included a required partnership (80%) and fell into health and social care services research (66%). Project length and funding amount increased from average of 24.8 months and $266 248 CAD in 2011–2013 to 31.6 months and $438 766 CAD in 2017–2019. There were significantly fewer required partnerships in 2017–2019.ConclusionsBetween 2011 and 2019 Canadian federally and provincially funded partnered health research reflected primarily care services research across many fields. The observed breadth suggests that partnered health research approaches are applicable in many fields of research. Additional work to support partnered research across all types of health research (especially biomedical research) is warranted. The administration of larger grants that are funded for longer time periods may address previously identified concerns among research teams engaging in partnered research but may mean that fewer teams receive funding and risk delaying responding to time-sensitive data needs for users. Our process and findings can be used as a starting point for international comparison.

Supporting Antiracism Through the Thoughtful Conduct, Evaluation, and Use of Research

Supporting Antiracism Through the Thoughtful Conduct, Evaluation, and Use of Research

Promoting the quality and transparency of health research in China

Background and ObjectivesTo review the efforts and progress in promoting quality and transparency of health research in China and to discuss how to improve. MethodsWe focused on three different types of health research: clinical trials, systematic reviews, and clinical practice guidelines, and summarized China's progress from their registration, implementation, and reporting stages. ResultsIn the last 3 decades, China's major works include the following: 1) For registration, the trials and CPGs registries have been set up, and released policies to mandate registration and submission of protocols for trials. 2) For implementation, multiple clinical research and EBM centers have been established. The ResMan platform for data management has been created and required researchers to share results data. 3) For reporting, the Chinese EQUATOR Center has been set up. Translations and extensions of the CONSORT, PRISMA, and RIGHT have been published. 4) For traditional Chinese medicine (TCM), specific guidelines for the registration and reporting of TCM research have been developed. ConclusionChina has made progress in promoting research quality and transparency, especially in research registration and reporting. Nevertheless, more can be done in data management and sharing for research implementation, and good publication practices in TCM.

Walking the walk: Advice for anti-racist academic leaders

The importance of advancing anti-racism within research has gained recent attention. Academic medical organizations have attempted to increase diversity while seeking structural reforms to advance equity. However, efforts remain constrained while persons from racialized groups continue to experience discrimination. Mental health research is not immune to the experience of inequity. There is ample evidence that mental health research is underfunded compared to other types of health research. In addition, many racialized researchers and research staff have experienced different forms of implicit, explicit, and structural racism and are finding the courage to share their stories. Such experiences of racial trauma have a disastrous impact on the well-being of mental health researchers and adversely influence our overall mission. In this commentary, we also provide tangible and practical suggestions for academic leaders in the field. First, leaders must name racism and resist fragility and defensive reactions when the topic of racism in research is broached. Second, leaders should seek to foster a culture of belonging on teams where feedback from all is welcomed and encouraged. Third, leaders should seek structural change to ensure that teams are diverse and the adverse influence of systemic forms of racial discrimination on research our mitigated. Fourth, leaders must center the voices and perspective of those impacted by racial discrimination when developing, implementing, and evaluating their anti-racism work.

Willingness to Participate in Health Research Among Community-Dwelling Middle-Aged and Older Adults: Does Race/Ethnicity Matter?

IntroductionOlder adults, including racial and ethnic minorities, are underrepresented in research. As the US population ages, the number of older racial and ethnic minority individuals will increase. Including these individuals in research is an important step towards reducing health disparities.MethodsWe used data from HealthStreet, a University of Florida community engagement program which uses community health workers to assess the health of the community, to assess willingness to participate in different types of health research by race/ethnicity. Descriptive statistics and logistic regression models were used to assess willingness to participate among adults aged 50 and older, by race/ethnicity (n = 4694).ResultsOur sample was 42.0% non-Hispanic White, 52.8% non-Hispanic Black, and 5.2% Hispanic. Non-Hispanic White participants reported more past research participation than non-Hispanic Black and Hispanic participants (28.7% vs. 19.0% and 19.2%, respectively). Compared with non-Hispanic White participants, non-Hispanic Black participants were less willing to participate in most types of studies, while Hispanic participants were less willing to participate in studies that might be seen as invasive (required blood sample, genetic sample, or participants to take medicine, or use of medical equipment).ConclusionsOur study provides investigators with a general profile of research preferences by race/ethnicity; compared with non-Hispanic White individuals, non-Hispanic Black individuals are less willing to participate in most studies, while Hispanic individuals are less willing to participate in studies that may be seen as invasive or demanding. It is imperative to include diverse older adults in health research. By tailoring research based on preferences we can improve recruitment in underrepresented populations.

Asian Americans are less willing than other racial groups to participate in health research.

Asian Americans constitute 5% of the U.S. population. Their willingness to participate in research is important to examine because it influences participation rates and the representativeness of study results. A total of 17,339 community members participated from six diverse Clinical and Translational Award (CTSA) sites. Community members were asked about their willingness to volunteer for eight different types of health research, their expectation of monetary compensation for research participation, their trust in research and researchers, their preferred language to receive health information, and their socio-demographic background. We examined Asian Americans' willingness to participate in various types of health research studies and compared their perceptions with other racial/ethnic groups (i.e., Asian n = 485; African-American n = 9516; Hispanic/Latino n = 1889; Caucasian n = 4760; and other minority n = 689). Compared to all other racial/ethnic groups, Asian Americans were less willing to participate in all eight types of health research. However, Asian Americans reported a lower amount of fair compensation for research participation than African-Americans and Hispanics/Latinos but were as likely to trust researchers as all other racial/ethnic groups. Asian Americans are less willing to participate in health research than other racial/ethnic groups, and this difference is not due to dissatisfaction with research compensation or lower trust in researchers. Lack of trust in research and language barriers should be addressed to improve representativeness and generalizability of all populations in research.

3487 Trust in Research Among Older Adults

OBJECTIVES/SPECIFIC AIMS: Adults, 60 years of age and older, are in high demand for enrollment in many types of health research. Here we aimed to examine baseline, 60-day and 120-day follow-up trust in research and researchers of Floridians 60 years of age and older engaged in University of Florida’s HealthStreet community engagement initiative. METHODS/STUDY POPULATION: HealthStreet Community Health Workers (CHWs) assess health needs and trust in research of community members and screen for dementia, before providing medical and social services referrals and linkages to opportunities to participate in relevant health research at UF. In addition, participants are followed up at 60 and 120 days. RESULTS/ANTICIPATED RESULTS: Among the 2,193 older adults assessed by CHWs, 62.6% were female, 46.8% were African American, and 6.1% Hispanic/Latino. At baseline, 28.3% reported ever being in a research study; 7.7% reported not being interested in participating in research. Trust in research and researchers was high at baseline [scored from 1 to 10 where 10 was high; mean of 7.4 each for trust in research (SD=2.0) and trust in researchers (SD=2.1)] and high at both follow-ups [60 days 7.8 (SD=2.1) and 7.7 (SD=2) for trust in research and researchers respectively; 120 days 8.0 for both (SD=1.9 and 1.8 respectively)]. DISCUSSION/SIGNIFICANCE OF IMPACT: Individuals who are 60 and older have high trust in research and researchers when approached and high interest in research. Their trust continues through work with HealthStreet CHWs. Community engagement is an important part of the pipeline for recruitment of older adults for research.

The 2016 CIOMS guidelines and public-health research ethics

In November 2016, the Council for International Organizations of Medical Sciences (CIOMS) published its revised International Ethical Guidelines for Health-related Research Involving Humans. In relation to earlier versions, the scope of the new guidelines has been expanded to include public-health research. While successful to some extent, the document does not take into sufficient account the differences between public-health research and other types of health research. It is silent on some issues of importance to public-health research, such as its definition, health inequities and novel research methodologies. Its treatment of some other issues, including the need for researchethics committee approval, consent, community involvement and dissemination of research results, are deficient in some respects. The guidelines that are particularly applicable to and useful for public-health research deal with social value, the health needs of communities and populations, community engagement, disasters and disease outbreaks, cluster randomised trials and data sharing. Much further development of the foundations and applications of public-health research ethics is needed to inform future revisions of the guidelines and of other international and national research-ethics documents.

The Social Value of Health Research and the Worst Off.

In this article we argue that the social value of health research should be conceptualized as a function of both the expected benefits of the research and the priority that the beneficiaries deserve. People deserve greater priority the worse off they are. This conception of social value can be applied for at least two important purposes: (1) in health research priority setting when research funders, policy-makers, or researchers decide between alternative research projects; and (2) in evaluating the ethics of proposed research proposals when research ethics committees (RECs) assess whether the social value of the research is sufficient to justify the risks and burdens to research participants and others. In assessing how far a proposed research project will advance the interests of people who are more disadvantaged, research priority setters and RECs should examine (at least) the diseases that the research targets and the type of research. Just as certain diseases impose a greater burden on people who are more disadvantaged, so certain types of intervention and forms of research are more likely to benefit people who are more disadvantaged. We outline which populations are likely to be representative of the global worst off and identify what types of health research, and which disease categories, are priorities for these populations.

Global priorities for research and the relative importance of different research outcomes: an international Delphi survey of malaria research experts.

BackgroundAs global research investment increases, attention inevitably turns to assessing and measuring the outcomes and impact from research programmes. Research can have many different outcomes such as producing advances in scientific knowledge, building research capacity and, ultimately, health and broader societal benefits. The aim of this study was to test the use of a Delphi methodology as a way of gathering views from malaria research experts on research priorities and eliciting relative valuations of the different types of health research impact.MethodsAn international Delphi survey of 60 malaria research experts was used to understand views on research outcomes and priorities within malaria and across global health more widely.ResultsThe study demonstrated the application of the Delphi technique to eliciting views on malaria specific research priorities, wider global health research priorities and the values assigned to different types of research impact. In terms of the most important past research successes, the development of new anti-malarial drugs and insecticide-treated bed nets were rated as the most important. When asked about research priorities for future funding, respondents ranked tackling emerging drug and insecticide resistance the highest. With respect to research impact, the panel valued research that focuses on health and health sector benefits and informing policy and product development. Contributions to scientific knowledge, although highly valued, came lower down the ranking, suggesting that efforts to move research discoveries to health products and services are valued more highly than pure advances in scientific knowledge.ConclusionsAlthough the Delphi technique has been used to elicit views on research questions in global health this was the first time it has been used to assess how a group of research experts value or rank different types of research impact. The results suggest it is feasible to inject the views of a key stakeholder group into the research prioritization process and the Delphi approach is a useful tool for eliciting views on the value or importance of research impact. Future work will explore other methods for assessing and valuing research impact and test the feasibility of developing a composite tool for measuring research outcomes weighted by the values of different stakeholders.Electronic supplementary materialThe online version of this article (doi:10.1186/s12936-016-1628-4) contains supplementary material, which is available to authorized users.

The usefulness of different types of health research: perspectives from a low-income country

This article explores the perceived value of public health research and the types of research considered useful in Ghana. Sixty-nine decision makers, researchers and stakeholders were interviewed. A broad range of research was highly valued. Two traits were important: an applied, relevant topic and quickly produced findings. Interviewees valued research which explored implementation issues or identified and increased understanding of health problems. Effectiveness research often lacked these traits and was not generally considered as important because it was implicitly assumed that as long as interventions (that were based on a good understanding of the situation) were implemented well, they would be effective.

How to Report a Research Study

Incomplete reporting hampers the evaluation of results and bias in clinical research studies. Guidelines for reporting study design and methods have been developed to encourage authors and journals to include the required elements. Recent efforts have been made to standardize the reporting of clinical health research including clinical guidelines. In this article, the reporting of diagnostic test accuracy studies, screening studies, therapeutic studies, systematic reviews and meta-analyses, cost-effectiveness assessments (CEA), recommendations and/or guidelines, and medical education studies is discussed. The available guidelines, many of which can be found at the Enhancing the QUAlity and Transparency Of health Research network, on how to report these different types of health research are also discussed. We also hope that this article can be used in academic programs to educate the faculty and trainees of the available resources to improve our health research.

Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada

BackgroundAlthough there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies.MethodsThis is a qualitative exploratory study informed by grounded theory strategies. Thirty-nine participants recruited in British Columbia and Manitoba, Canada, who had taken part in a diverse range of health research studies participated in semi-structured interviews. Participants described their experiences of health research participation including motivations for volunteering. Interviews were recorded, transcribed, and analyzed using constant comparisons. Coding and data management was supported by Nvivo-7.ResultsA predominant theme to emerge was 'participation in health research to access health services.’ Participants described research as ways of accessing: (1) Medications that offered (hope of) relief; (2) better care; (3) technologies for monitoring health or illness. Participants perceived standard medical care to be a “trial and error” process akin to research, which further blurred the boundaries between research and treatment.ConclusionsOur findings have implications for recruitment, informed consent, and the dichotomizing of medical/health procedures as either research or treatment. Those with low health status may be more vulnerable to potential coercion, suggesting the need for a more cautious approach to obtaining consent. Our findings also indicate the need for boundary work in order to better differentiate treatment and research. It is important however to acknowledge a categorical ambiguity; it is not always the case that people are misinformed about the possible benefits of research procedures (i.e., therapeutic misconception); our participants were aware that the primary purpose of research is to gain new knowledge yet they also identified a range of actual health benefits arising from their participation.

The future of quality improvement research

Presentation The history of quality improvement research (QIR) demonstrates the large growth in improvement activities from early quality assessment and small area variation work through the adoption of industrial quality improvement methods in healthcare operations to the recent opportunities inherent in the Affordable Care Act of 2010. But after 40 years of development, significant growth in these scholarly activities has not produced comparable growth in insights, practical guidance, or progress toward better care. Five challenges influence the trajectory of improvement work and implementation science. The first challenge relates to the innovations and evidence base to improve healthcare. The focus of innovation and research in improvement has been on strategies, facilities and systems that are leaders in performance and quality improvement – the organizational equivalents of healthy white males. This makes differentiation and generalizability to the range of organizational settings difficult. A concerted effort must be made to focus on research conducted within, and with relevance to, the broader practice environment. The second challenge includes multiple logistical barriers such as access to study sites, the limited funding opportunities for QIR, and the lack of consistent IRB guidance and interpretation of regulations. Underlying these barriers is a considerable lack of clarity surrounding the nature of QIR relative to other types of health research. With the exception of the recent statement on cluster randomized trials by the Ottawa Ethics of Cluster Randomized Trials Consensus Group (2012)[1], the absence of consistent guidelines for QIR poses challenges for researchers trying to obtain local IRB review as well as investigators competing with others using more traditional research methods during the grant review process. QIR researchers need to embrace the IRB process and develop explicit, consensus-based guidance to facilitate more consistent reviews at the funding and IRB stages. The third challenge includes the professional differences that stem from the diversity of academic disciplines and types of institutions from which people involved in this work emerge. The concepts and definitions arising from diverse disciplinary roots make it difficult to achieve progress and move forward collectively. These factors pose barriers to the scholarly QIR community and, more importantly, contribute to confusion and decreased credibility among external stakeholders and scientists in the more traditional fields of study surrounding QIR. Lack of consensus and clarity impede the advance of this science because researchers cannot explain the work consistently to funding agencies, editorial review boards and other stakeholders. The fourth challenge is the need to strengthen the theoretical foundations for this work. There is an urgent need to assess whether we have the right theories, too many theories or simply a lack of guidance in using theories to build the science of improvement. The weak theoretical basis for QIR contributes to the fifth and final challenge to the future, which is advancing the science through robust and appropriate research approaches, designs and methods. The field has failed to reach consensus about the major research questions and goals for QIR, and continues to debate the appropriate methods for improvement and implementation work. Different views regarding the value and need for various research approaches and methods for conducting QIR limits the production of practical and effective insights and tools for researchers, clinicians, organizations, and policy decision makers.

Performing the human subject: Arts-based knowledge dissemination in health research

This article reflects on a pilot project undertaken at the University of British Columbia, Canada, by an interdisciplinary team of researchers and lay and professional artists. The project was an experiment in the use of arts-based methods as a means of disseminating research findings from a five-year funded study entitled ‘Centring the Human Subject in Health Research: Understanding the Meaning and Experience of Research Participation’. Through the creation, performance and/or display of found poetry, drama, song and visual arts, more than 50 researchers and artists collectively presented the experiences of human subjects involved in many types of health research. By way of detailed discussion, this article explores the practice and process of interdisciplinarity as it applies to arts-based health research.

Consent for use of personal information for health research: Do people with potentially stigmatizing health conditions and the general public differ in their opinions?

BackgroundStigma refers to a distinguishing personal trait that is perceived as or actually is physically, socially, or psychologically disadvantageous. Little is known about the opinion of those who have more or less stigmatizing health conditions regarding the need for consent for use of their personal information for health research.MethodsWe surveyed the opinions of people 18 years and older with seven health conditions. Participants were drawn from: physicians' offices and clinics in southern Ontario; and from a cross-Canada marketing panel of individuals with the target health conditions. For each of five research scenarios presented, respondents chose one of five consent choices: (1) no need for me to know; (2) notice with opt-out; (3) broad opt-in; (4) project-specific permission; and (5) this information should not be used. Consent choices were regressed onto: demographics; health condition; and attitude measures of privacy, disclosure concern, and the benefits of health research. We conducted focus groups to discuss possible reasons for observed consent choices.ResultsWe observed substantial variation in the control that people wish to have over use of their personal information for research. However, consent choice profiles were similar across health conditions, possibly due to sampling bias. Research involving profit or requiring linkage of health information with income, education, or occupation were associated with more restrictive consent choices. People were more willing to link their health information with biological samples than with information about their income, occupation, or education.ConclusionsThe heterogeneity in consent choices suggests individuals should be offered some choice in use of their information for different types of health research, even if limited to selectively opting-out. Some of the implementation challenges could be designed into the interoperable electronic health record. However, many questions remain, including how best to capture the opinions of those who are more privacy sensitive.

Setting Priorities in Global Child Health Research Investments: Universal Challenges and Conceptual Framework

Setting Priorities in Global Child Health Research Investments: Universal Challenges and Conceptual Framework

Patients as Partners in a Health Research Agenda Setting

This article deals with the participation of patients in setting the agenda of health research that potentially directly affects their lives. The focus is on the communication problems encountered between lay people and medical professionals in developing a joint research agenda. The author argues that a participatory methodology can address these problems and thereby give patients "a say" in the types of health research that have the greatest chance of affecting them personally. The article uses a case example of people with spinal cord injuries participating in research to support the importance and value of patient participation. The case example also helps to rethink appropriate methodologies or at least to modify existing approaches by paying more attention to required social conditions, diversity, and the life world of patients to foster meaningful participation.

The role of methods in maintaining orthodox beliefs in health research

Views about correct ways of obtaining knowledge develop from socially constructed tenets and beliefs. The dominant beliefs about how health research should be conducted are derived from the biomedical model of human health. The beliefs are maintained by traditions developed in support of the orthodox model and by power relationships. This paper examines the impact of the orthodox views of the biomedical model on the research methods used to investigate population health issues. Experimental design is the “gold standard” for research in the biomedical model. Beliefs about the superiority of experimental research have affected most types of health research. The role that methods assume in maintaining the orthodoxy is examined. Acceptance in other health disciplines of the attitudes of the dominant paradigm and limited options for research and training in alternatives to the orthodoxy became major influences reinforcing orthodox beliefs about health research.

The utilisation of health research in policy-making: concepts, examples and methods of assessment.

The importance of health research utilisation in policy-making, and of understanding the mechanisms involved, is increasingly recognised. Recent reports calling for more resources to improve health in developing countries, and global pressures for accountability, draw greater attention to research-informed policy-making. Key utilisation issues have been described for at least twenty years, but the growing focus on health research systems creates additional dimensions.The utilisation of health research in policy-making should contribute to policies that may eventually lead to desired outcomes, including health gains. In this article, exploration of these issues is combined with a review of various forms of policy-making. When this is linked to analysis of different types of health research, it assists in building a comprehensive account of the diverse meanings of research utilisation.Previous studies report methods and conceptual frameworks that have been applied, if with varying degrees of success, to record utilisation in policy-making. These studies reveal various examples of research impact within a general picture of underutilisation.Factors potentially enhancing utilisation can be identified by exploration of: priority setting; activities of the health research system at the interface between research and policy-making; and the role of the recipients, or 'receptors', of health research. An interfaces and receptors model provides a framework for analysis.Recommendations about possible methods for assessing health research utilisation follow identification of the purposes of such assessments. Our conclusion is that research utilisation can be better understood, and enhanced, by developing assessment methods informed by conceptual analysis and review of previous studies.