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Remember, though, the process of engagement is as important as the product. Here are 10 principles that community stakeholders endorse as the guiding compass on your journey to establishing trustworthiness.


This toolkit of materials is for organizations to download and use to facilitate discussions within their communities, develop relationships with a broad coalition, and track lessons learned. It includes the kinds of questions, discussions, and activities that will help an organization and its community to unpack the Principles of Trustworthiness, explore how they come to life locally, and determine what local actions might be taken to demonstrate trustworthiness.

Qualitative content analysis as described in published literature shows conflicting opinions and unsolved issues regarding meaning and use of concepts, procedures and interpretation. This paper provides an overview of important concepts (manifest and latent content, unit of analysis, meaning unit, condensation, abstraction, content area, code, category and theme) related to qualitative content analysis; illustrates the use of concepts related to the research procedure; and proposes measures to achieve trustworthiness (credibility, dependability and transferability) throughout the steps of the research procedure. Interpretation in qualitative content analysis is discussed in light of Watzlawick et al.'s [Pragmatics of Human Communication. A Study of Interactional Patterns, Pathologies and Paradoxes. W.W. Norton & Company, New York, London] theory of communication.

In the course of our supervisory work over the years we have noticed that qualitative research tends to evoke a lot of questions and worries, so-called frequently asked questions (FAQs). This series of four articles intends to provide novice researchers with practical guidance for conducting high-quality qualitative research in primary care. By 'novice' we mean Master's students and junior researchers, as well as experienced quantitative researchers who are engaging in qualitative research for the first time. This series addresses their questions and provides researchers, readers, reviewers and editors with references to criteria and tools for judging the quality of qualitative research papers. The first article provides an introduction to this series. The second article focused on context, research questions and designs. The third article focused on sampling, data collection and analysis. This fourth article addresses FAQs about trustworthiness and publishing. Quality criteria for all qualitative research are credibility, transferability, dependability, and confirmability. Reflexivity is an integral part of ensuring the transparency and quality of qualitative research. Writing a qualitative research article reflects the iterative nature of the qualitative research process: data analysis continues while writing. A qualitative research article is mostly narrative and tends to be longer than a quantitative paper, and sometimes requires a different structure. Editors essentially use the criteria: is it new, is it true, is it relevant? An effective cover letter enhances confidence in the newness, trueness and relevance, and explains why your study required a qualitative design. It provides information about the way you applied quality criteria or a checklist, and you can attach the checklist to the manuscript.

Trusting intelligently gets harder when tasks are more complex. Most of us cannot judge the products marketed by the financial services industry, or by insurers. Most of us cannot assess scientific claims or new technologies. In these complex cases we can place and refuse trust intelligently only by finding proxy evidence of trustworthiness, since the complete evidence is too complicated for the less expert. We can all think of examples of useful proxy evidence provided by experts. In the best cases, auditors, examiners, regulators, evaluators, peer reviewers and experts of other sorts can judge trustworthiness, and then offer an intelligible summary that serves as proxy evidence for the less expert. Most of us can unfortunately also think of cases in which the proxy evidence provided by experts was too complex, irrelevant or unusable, so could not support the intelligent placing and refusal of trust.

Summary: Websites must establish trust and present themselves as credible to turn visitors into customers. The methods that people use to determine trustworthiness on the web have remained stable throughout the years, even with changing design trends.

The 4 factors of trustworthiness are important to every website, and have remained stable for decades. Even though the specifics of how to meet these trust guidelines have evolved over time, the underlying principles still stay valid. This is why it is always important to see the why behind design guidelines rather than blindly applying them. By understanding why people care about design quality, upfront disclosure of information, comprehensive content, and a connection to the rest of the web, you can adapt to new expectations and new web-design styles.

The future of genomic medicine relies on the ability of researchers and clinicians to access large quantities of genomic and health data. The support of patients and the public for the collection and use of data is central to the success and sustainability of genomic research [1]. However, public willingness to share data and trust in the bodies responsible for the collection and sharing of genomic data varies between countries and between actors involved in the genomic data ecosystem [2, 3]. Trust in the for-profit research sector and governments, for example, is commonly lower than that in non-profit and clinical organisations [4,5,6,7]. In this paper, we present findings on public views of measures that may increase trust by ensuring or demonstrating the trustworthiness of the organisations, institutions and individuals working with genomic datasets.

As a whole, the patterns of consistency and variation shown here provide nuance to discussions of trustworthiness and present challenges to those developing standards and governance models to facilitate the international sharing of genomic and health data. Most significantly, they suggest that while it is important to work to establish codes of conduct and demonstrate shared values and goals between researchers and data donors, conclusions from such work can only be tentatively extended across national settings. They further point to the need for detailed comparative work, including qualitative studies, to understand how and why trustworthiness can be demonstrated by the individuals and institutions using genomic and health data.

The limitations of the study and design have been published separately [24]. As an exploratory cross-sectional online survey, the study is limited in that it captures intended behaviour at a single time point. Three particular limitations are important to note. Firstly, our analysis is limited to those who would be willing to consider donating their DNA or health information for research. While this includes the majority of the sample, it cannot tell us which measures to increase trust may be more valued by those who definitely will not donate. Second, although the survey was translated and back-translated, nuances of language and culture may affect how participants interpret the options presented. Finally, measures deemed as important in this study, while important and likely necessary, are unlikely to be sufficient on their own to assure potential donors of DNA and health data of the trustworthiness of actors involved in collecting, using and sharing data.

The analysis of responses across the 22 countries included in the Your DNA, Your Say survey suggests practical findings related to demonstrating the trustworthiness of genomic data initiatives, and directions for further research to explore global public perspectives in more detail. They show the importance of research ethics principles related to the right to withdraw, but suggest that legal and regulatory controls may be more important in preventing the loss of trust than in rebuilding it. While highlighting significant variation between countries, they emphasise the importance of transparency about data uses, but particularly about the goals of data collection, and the potential benefits for patients and society, and for data users themselves.

Dr. Maybank: Good afternoon, everyone. I am Dr. Aletha Maybank, chief health equity officer at the American Medical Association. And I thank you for joining us for this next episode of Prioritizing Equity. We have a really important conversation as many conversations have been important over the last I'd say months, I guess, but especially now more recently as conversations around the pending approval and distribution of COVID vaccines are continuing to heat up and there are growing concerns over distress amongst people impacting the uptake of the vaccine. And we know that distrust is rooted and exacerbated and really made worse by the lack of trustworthiness by institutions and government, just to name a few that we know exist. I wanted to be very clear as I start off by saying that, patients and communities have a right to distrust health communities, health officials. It is a really rational place for them to come from especially for Black and Brown communities.

Dr. Maybank: Great. Thank you. So let's get into the mid of the conversation, and thank you all for sharing your minds but also your hearts. As I always say that's an important part of equity work and transformation work. So, we know that there's a long history of medical and scientific racism in the United States, you all have studied it, and a lack of trustworthiness as I mentioned before on the part of health care institutions. There's the politicization as well as polarization as the response to the epidemic. And we know as is already highlighted, the disproportionate impact related to Black and Brown people and getting sick as well as dying. And so, the levels of distrust for our health care systems have really only increased. And so Dr. Corbie-Smith you are one of the leading experts in research. And before I have known you personally, I've been reading your work for a long time, and you really understand the roots of distrust. And so, can you please provide a frame on how we should be thinking and applying and speaking about the history's complexities of distrust on this modern day epidemic. 041b061a72


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