Core values of genomic citizen science: results from a qualitative interview study.

Genomic citizen science initiatives that promote public involvement in the study or manipulation of genetic information are flourishing. These initiatives are diverse and range from data donation studies, to biological experimentation conducted in home and community laboratories, to self-experimentation. Understanding the values that citizen scientists associate with their activities and communities can be useful to policy development for citizen science. Here, we report values-relevant data from qualitative interviews with 38 stakeholders in genomic citizen science. Applying a theoretical framework that describes values as transcendent beliefs about desirable end states or behaviors that can be categorized according to the motivational goals that they express and the interests they serve, we identified nine core values of genomic citizen science: altruism, autonomy, fun, inclusivity, openness, reciprocity, respect, safety, and solidarity.

"Idealists and capitalists": ownership attitudes and preferences in genomic citizen science.

The perspectives of genomic citizen scientists on ownership of research outputs are not well understood, yet they are useful for identifying alignment of participant expectations and project practices and can help guide efforts to develop innovative tools and strategies for managing ownership claims. Here, we report findings from 52 interviews conducted in 2018 and 2019 to understand genomic citizen science stakeholders' conceptualizations of, experiences with, and preferences for ownership of research outputs. Interviewees identified four approaches for recognizing genomic citizen scientists' ownership and related credit interests in research outputs: shared governance via commons models; fractional ownership of benefits; full and creative attribution; and offensive and defensive patenting. Interviewees also agreed that the model selected by any project should at least maximize access to research outputs and, as appropriate and to the extent possible, broadly distribute rights of control and entitlements to research benefits.

The association between professional stratification and use of online sources: Evidence from the National Dental Practice-Based Research Network.

The use of online information sources in most professions is widespread, and well researched. Less understood is how the use of these sources vary across the strata within a single profession, and how question context affects search behaviour. Using the dental profession as a case of a highly stratified discipline, we examine search preferences for sources by professional strata among dentists in a practice-based network. Results show that variation exists in information search behaviour across professional strata of dental clinicians. This study highlights the importance of addressing information literacy across different levels of a profession. Findings also underscore that search behaviour and source preference vary with perceived question relevance.

A principal components analysis of factors associated with successful implementation of an LVAD decision support tool.

BACKGROUND: A central goal among researchers and policy makers seeking to implement clinical interventions is to identify key facilitators and barriers that contribute to implementation success. Despite calls from a number of scholars, empirical insights into the complex structural and cultural predictors of why decision aids (DAs) become routinely embedded in health care settings remains limited and highly variable across implementation contexts. METHODS: We examined associations between "reach", a widely used indicator (from the RE-AIM model) of implementation success, and multi-level site characteristics of nine LVAD clinics engaged over 18 months in implementation and dissemination of a decision aid for left ventricular assist device (LVAD) treatment. Based on data collected from nurse coordinators, we explored factors at the level of the organization (e.g. patient volume), patient population (e.g. health literacy; average sickness level), clinician characteristics (e.g. attitudes towards decision aid; readiness for change) and process (how the aid was administered). We generated descriptive statistics for each site and calculated zero-order correlations (Pearson's r) between all multi-level site variables including cumulative reach at 12 months and 18 months for all sites. We used principal components analysis (PCA) to examine any latent factors governing relationships between and among all site characteristics, including reach. RESULTS: We observed strongest inclines in reach of our decision aid across the first year, with uptake fluctuating over the second year. Average reach across sites was 63% (s.d. = 19.56) at 12 months and 66% (s.d. = 19.39) at 18 months. Our PCA revealed that site characteristics positively associated with reach on two distinct dimensions, including a first dimension reflecting greater organizational infrastructure and standardization (characteristic of larger, more established clinics) and a second dimension reflecting positive attitudinal orientations, specifically, openness and capacity to give and receive decision support among coordinators and patients. CONCLUSIONS: Successful implementation plans should incorporate specific efforts to promote supportive and mutually informative interactions between clinical staff members and to institute systematic and standardized protocols to enhance the availability, convenience and salience of intervention tool in routine practice. Further research is needed to understand whether "core predictors" of success vary across different intervention types.

"A cohort of pirate ships": biomedical citizen scientists' attitudes toward ethical oversight.

As biomedical citizen science initiatives become more prevalent, the unique ethical issues that they raise are attracting policy attention. The ethical oversight of bottom-up biomedical citizen science projects that are designed and executed primarily or solely by members of the public is a significant concern because the federal rules that require ethical oversight of research by institutional review boards generally do not apply to such projects, creating what has been called an ethics gap. Working to close this gap, practitioners and scholars have considered new mechanisms of ethical oversight for biomedical citizen science. To date, however, participants' attitudes about ethics and oversight preferences have not been systematically examined. This information is useful to efforts to develop ethical oversight mechanisms because it provides a basis for evaluating the likely effectiveness of specific features of such mechanisms and their acceptability from the perspective of biomedical citizen scientists. Here, we report data from qualitative interviews with 35 stakeholders in bottom-up biomedical citizen science about their general ethics attitudes and preferences regarding ethical oversight. Interviewees described ten ethical priorities and endorsed oversight mechanisms that are voluntary, community-driven, and offer guidance. Conversely, interviewees rejected mechanisms that are mandatory, hierarchical, and inflexible. Applying these findings, we conclude that expert consultation and community review models appear to align well with ethical priorities and oversight preferences of many biomedical citizen scientists, although local conditions should guide the development and use of mechanisms in specific communities.

How Biomedical Citizen Scientists Define What They Do: It's All in the Name.

BACKGROUND: As citizen science continues to grow in popularity, there remains disagreement about what terms should be used to describe citizen science activities and participants. The question of how to self-identify has important ethical, political, and practical implications to the extent that shared language reflects a common ethos and goals and shapes behavior. Biomedical citizen science in particular has come to be associated with terms that reflect its unique activities, concerns, and priorities. To date, however, there is scant evidence regarding how biomedical citizen scientists prefer to describe themselves, their work, and the values that they attach to these terms. METHODS: In 2018, we conducted semi-structured interviews with 35 biomedical citizen scientists in connection with a larger study to understand ownership preferences. Interview data were analyzed to identify the terms that interviewees used and avoided to describe themselves and their work, as well as the reasons for their preferences. RESULTS: Biomedical citizen scientists self-identified using three main terms: citizen scientist, biohacker, and community scientist. However, there was a lack of consensus among interviewees on the appropriateness of each term, two of which prompted conflicting responses. Self-identification preferences were based on personal judgments about whether specific terms convey respect, are provocative, or are broad and inclusive, as well as the desirability of each of these messages. CONCLUSIONS: The lack of consensus about self-identification preferences in biomedical citizen science reflects the diversity of experiences and goals of individuals participating in this field, as well as different perceptions of the values signaled by and implications of using each term. Heterogeneity of preferences also may signal the parallel development of multiple communities in biomedical citizen science.

Practitioner Engagement in Activities of the National Dental Practice-Based Research Network (PBRN): 7-Year Results.

PURPOSE: To 1) quantify practitioner activities of the National Dental Practice-Based Research Network (Network) for which Continuing Education (CE) credits were received (study training, videos, webinars, meetings, and symposia); 2) quantify practitioner coauthoring Network publications and presentations; and 3) test whether practitioner characteristics were associated with participation in these activities. METHODS: A retrospective analysis of 4361 practitioners who enrolled in the Network between April 12, 2012 and October 12, 2018. RESULTS: Overall, 59% (n = 2586) of practitioners earned CE credit from the Network; among these, 68% (n = 1757) from a video, 38% (n = 993) attended an annual Network meeting, 31% (n = 798) due to training for a Network clinical study, 9% (n = 226) attended a national symposium, and 7% (n = 170) participated in a Network webinar. Members of 2 large group practices earned on average more CEs than practitioners from other practice settings. Four percent (n = 159) of practitioners coauthored a Network presentation or publication. Practitioners who received their dental degree before 2000, were general practitioners, or were members of 2 large group practices, were more likely to have coauthored a publication or presentation. CONCLUSION: This Network used a broad range of activities to engage community practitioners. These activities were successful in sustaining a high level of practitioner engagement in clinical research and its relevance to everyday clinical practice.

Using Nudges to Enhance Clinicians' Implementation of Shared Decision Making With Patient Decision Aids.

Background. Although effective interventions for shared decision making (SDM) exist, there is a lack of uptake of these tools into clinical practice. "Nudges," which draw on behavioral economics and target automatic thinking processes, are used by policy makers to influence population-level behavior change. Nudges have not been applied in the context of SDM interventions but have potential to influence clinician motivation, a primary barrier to long-term adoption of SDM tools. Objective. Describe, evaluate, and propose recommendations for the use of a behavioral economics framework (MINDSPACE) on clinician motivation and behavior during implementation of a validated decision aid (DA) for left ventricular assist device at nine hospitals. Methods. Qualitative thematic analysis of process notes from stakeholder meetings during the first 6 months of implementation to identify examples of how the MINDSPACE framework was operationalized. Quantitative implementation progress was evaluated using the RE-AIM framework. Results. MINDSPACE components were translated into concrete approaches that leveraged influential stakeholders, fostered ownership over the DA and positive emotional associations, spread desirable norms across sites, and situated the DA within established default processes. DA reach to eligible patients increased from 9.8% in the first month of implementation to 70.0% in the sixth month. Larger gains in reach were observed following meetings using MINDSPACE approaches. Limitations. The MINDSPACE framework does not capture all possible influences on behavior and responses to nudges may differ across populations. Conclusions. Behavioral economics can be applied to implementation science to foster uptake of SDM tools by increasing clinician motivation. Our recommendations can help other researchers effectively apply these approaches in real-world settings when there are often limited incentives and opportunities to change organizational- or structural-level factors.

Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs?

BACKGROUND: Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger-and also more likely to conflict with those of institution-based researchers and other stakeholders-as participants become more involved, quantitatively and qualitatively, in the research process. It is not yet known, however, how genomic citizen science initiatives are managing the interests of their participants in accessing and controlling research outputs in practice. To help fill this gap, we conducted an in-depth review of relevant policies and practices of U.S.-based genomic citizen science initiatives. METHODS: We queried the peer-reviewed literature and grey literature to identify 22 genomic citizen science initiatives that satisfied six inclusion criteria. A data collection form was used to capture initiative features, policies, and practices relevant to participants' access to and control over research outputs. RESULTS: This analysis revealed that the genomic citizen science landscape is diverse and includes many initiatives that do not have institutional affiliations. Two trends that are in apparent tension were identified: commercialization and operationalization of a philosophy of openness. While most initiatives supported participants' access to research outputs, including datasets and published findings, none supported participants' control over results via intellectual property, licensing, or commercialization rights. However, several initiatives disclaimed their own rights to profit from outputs. CONCLUSIONS: There are opportunities for citizen science initiatives to incorporate more features that support participants' access to and control over research outputs, consistent with their specific objectives, operations, and technical capabilities.

Suffering and Healing in the Context of LVAD Treatment.

BACKGROUND: Illness narratives with meaningful, competent and targeted content have been shown to provide useful guides for patient decision-making and have positive influences on health behaviors. The use of narratives in decision aids can confer a sense of structure, plot and context to illness experiences and help patients make treatment decisions that feel sensible, informed, and transparent. AIM: This paper presents narratives of suffering and healing from patients and their caregivers with advanced heart failure who engaged in decision-making regarding Left Ventricular Device Assist (LVAD) treatment. METHODS: Narratives were collected from in-depth interviews with patients who accepted (n = 15) versus declined (n = 15) LVAD implant, LVAD candidates who had received education about LVAD and were in the process of making a decision (n = 15), and caregivers (family or significant others) of LVAD patients (n = 15). RESULTS: Participants shared "restitution" narratives that most commonly conveyed a shift from pre-implant physical suffering and "daily hell," fatigue so intense it "hurts," along with emotional suffering from inability to engage with the world, to post-implant improvements in mobility and quality of life, including positivity and family support, adaptation on a "journey," "getting one's life back" and becoming "normal" again. CONCLUSION: For LVAD patients, other patients' illness narratives can help to give meaning to their own illness and treatment experiences and to more accurately forecast treatment impacts on lifestyle and identity. For clinicians, patient narratives can enhance patient-practitioner communication and understanding by highlighting perspectives and values that structure patients' clinical experiences.

Identifying Knowledge Gaps among LVAD Candidates.

Education is an important aspect of evaluation and consent for left ventricular assist device (LVAD) candidates. A better understanding of candidate knowledge during the education process can help identify knowledge gaps and improve informed consent processes. This paper presents the results from a validated, LVAD-specific Knowledge Scale administered to candidates before and after education to identify items most and least frequently answered correctly. At baseline and 1-week, both candidates educated with a standard education and an LVAD-specific decision aid were most likely to answer logistical items relating to support and self-care correctly with ≥90% of candidates answering these items correctly after education. Candidates were least likely to answer questions about risks, transplant eligibility, and expenses correctly with <60% of candidates answering them correctly after education. Items with the greatest improvement in correct answers from baseline to 1-week were primarily related to the logistics of living with an LVAD. Candidates educated with the decision aid showed significant improvements on more knowledge items including those related to the forecasting of recovery and complications when compared to candidates educated with a standard education. The 20-item scale provides a standardized way for clinicians to identify knowledge gaps with LVAD candidates, potentially helping to tailor education. Targeted improvements in LVAD education should focus on the understanding of risk and potential complications to ensure that decision-making and informed consent processes emphasize both the patient and clinicians' conceptualizations of knowledge needs for informed consent.

"You Come Back to the Same Ole Shit:" A Qualitative Study of Smoking Cessation Barriers among Women Living with HIV: Implications for Intervention Development.

Although tobacco use among women living with HIV (WLWH) is decreasing, the prevalence is more than double that of women in the general population and remains an important health behavior to target among WLWH. Few smoking cessation interventions specifically focus on the unique social and medical needs of WLWH. Thus, the investigative team engaged WLWH (N=18) in qualitative focus groups to: 1) understand barriers and facilitators to smoking cessation; and 2) inform intervention structure and content priorities. Participants identified salient reasons for smoking and barriers to smoking cessation, which included coping with multiple life stressors, HIV-related stress, HIV-related stigma and social isolation. Further, WLWH highlighted the importance of long-term smoking cessation support, peer support, mental health content, religion/spirituality, and targeted risk messaging in smoking cessation intervention development. Study findings provide concrete, operational strategies for future use in a theory-based smoking cessation intervention, and underscore the importance of formative research to inform smoking cessation interventions for WLWH.

Practitioner Participation in National Dental Practice-based Research Network (PBRN) Studies: 12-Year Results.

PURPOSE: This study examines practitioner participation over 12 years in the National Dental Practice-Based Research Network (PBRN) studies and practitioner meetings, average length of participation, and association of practitioner- and practice-level characteristics with participation. Little information exists about practitioners' long-term participation in PBRNs. METHODS: The network conducted a retrospective analysis of practitioner participation in 3 main network activities during 2005 to 2017. Practitioners who completed an enrollment questionnaire, practiced in the United States, and either attended a network meeting or received an invitation to complete a questionnaire or clinical study were included in the analysis. Practitioners (n = 3669) met inclusion criteria. The network implemented 38 studies (28 clinical and 10 questionnaire), 23 of which (15 clinical and 8 questionnaire) met the criteria for the current analysis. RESULTS: Overall, 86% (N = 3148) participated in at least 1 network activity during 2005 to 2017. Questionnaire studies had the highest rate with 81% (N = 2963) completing at least 1, 21% (N = 762) completed at least 1 clinical study and 19% (N = 700) attended at least 1 network meeting. Among 1578 practitioners enrolled in the first 5 years of the Network launch, 20% (N = 320) participated in multiple network activities over 5 to 9 years, and 14% (N = 238) for 10 to 12 years. Practitioner characteristics associated with participation varied depending on the activity assessed. CONCLUSION: The network engaged practitioners in its research activities with relatively high participation rates over a 12-year period. Strategies employed by the network to engage practitioners may serve as a model for PBRN networks for other allied health professions.