Health-care practitioners’ preferences for the return of secondary findings from next-generation sequencing: a discrete choice experiment

2020 ◽  
Vol 22 (12) ◽  
pp. 2011-2019
Author(s):  
Shan Jiang ◽  
Aslam H. Anis ◽  
Ian Cromwell ◽  
Tima Mohammadi ◽  
Kasmintan A. Schrader ◽  
...  
2017 ◽  
Vol 25 (5) ◽  
pp. 658-658 ◽  
Author(s):  
Karine Sénécal ◽  
Kristof Thys ◽  
Danya F Vears ◽  
Kristof Van Assche ◽  
Bartha M Knoppers ◽  
...  

Author(s):  
Maartje J. van der Aa ◽  
Aggie T. G. Paulus ◽  
Mickaël J. C. Hiligsmann ◽  
Johannes A. M. Maarse ◽  
Silvia M. A. A. Evers

In Europe, health insurance arrangements are under reform. These arrangements redistribute collectively financed resources to ensure access to health care for all. Allocation of health services is historically based on medical needs, but use of other criteria, such as lifestyle, is debated upon. Does the general public also have preferences for conditional allocation? This depends on their opinions regarding deservingness. The aim of this study was to gain insight in those opinions, specifically by examining the perceived weight of different criteria in allocation decisions. Based on literature and expert interviews, we included 5 criteria in a discrete choice experiment: need, financial capacity, lifestyle, cooperation with treatment, and package/premium choice. A representative sample of the Dutch population was invited to participate (n = 10 760). A total of 774 people accessed the questionnaire (7.2%), of whom 375 completed it (48.4%). Medical need was overall the most important criterion in determining deservingness (range β = 1.60). Perceived deservingness decreased if claimants had higher financial capacity (1.26) and unhealthier lifestyle (1.04), if their cooperation was less optimal (1.05), or if they had opted for less insurance coverage (0.56). However, preferences vary among respondents, in relation to demographic and ideological factors.


2018 ◽  
Vol 29 (9) ◽  
pp. 851-860 ◽  
Author(s):  
Alec Miners ◽  
Carrie Llewellyn ◽  
Carina King ◽  
Alex Pollard ◽  
Anupama Roy ◽  
...  

To understand whether people attending sexual health (SH) clinics are willing to participate in a brief behavioural change intervention (BBCI) to reduce the likelihood of future sexually transmitted infections (STIs) and to understand their preferences for different service designs, we conducted a discrete choice experiment (DCE) with young heterosexual adults (aged 16–25 years), and men who have sex with men (MSM) aged 16 or above, attending SH clinics in England. Data from 368 participants showed that people particularly valued BBCIs that involved talking (OR 1.45; 95%CI 1.35, 1.57 compared with an ‘email or text’-based BBCIs), preferably with a health care professional rather than a peer. Findings also showed that 26% of respondents preferred ‘email/texts’ to all other options; the remaining 14% preferred not to participate in any of the offered BBCIs. These results suggest that most people attending SH clinics in England are likely to participate in a BBCI if offered, but the type/format of the BBCI is likely to be the single important determinant of uptake rather than characteristics such as the length and the number of sessions. Moreover, participants generally favoured ‘talking’-based options rather than digital alternatives, which are likely to require the most resources to implement.


2018 ◽  
Vol 2 (S1) ◽  
pp. 79-79
Author(s):  
Matthew Neu ◽  
Jaimie Richards ◽  
Sara J. Knight

OBJECTIVES/SPECIFIC AIMS: Objectives: Decreasing costs and increasing evidence for clinical utility have contributed to whole genome sequencing (WGS) becoming a clinical reality. While previous studies have surveyed the attitudes of patients and community members towards specific gene tests, an emerging literature has begun to describe the preferences of diverse recipients for WGS results. In this study, we sought to identify and synthesize the quantitative evidence on preferences for results from WGS using a systematic review of the literature. METHODS/STUDY POPULATION: We conducted a search of articles on PubMed including subject index terms WGS, whole exome sequencing, genome sequencing, secondary findings, incidental findings, attitudes, preferences, choices, utilities, stated-preferences, discrete choice experiment, and willingness-to-pay. We conducted 11 formal searches to refine the strategy and conducted a final search in December 2017. Duplicates were eliminated and a title and abstract review was conducted to select articles meeting inclusion criteria. RESULTS/ANTICIPATED RESULTS: Our search strategy identified 79 publications meeting initial search criteria with 30 manuscripts meeting inclusion criteria. Of these, most studies were conducted with patient-participants enrolled in existing sequencing studies, while few engaged members of the general public. Of the studies conducted on patients, most were on the medical setting of cancer and related syndromes. The earliest publication date of a manuscript meeting our inclusion criteria was in 2012, yet the majority were published in 2015 or later. DISCUSSION/SIGNIFICANCE OF IMPACT: Between 2012 and 2015, we saw an increasing focus in the medical literature on understanding public and patient preferences for return of results from WGS and WES. Both public and patient populations participating in surveys expressed preferences for receiving results from next-generation sequencing, even if the results are secondary or incidental findings unrelated to the primary indication for sequencing. A primary factor related to patient interest in incidental or secondary findings is the extent to which these results can inform medical intervention. Few studies surveyed representative population-based samples, and this may be an area for future investigation.


2020 ◽  
Author(s):  
Vasileios Nittas ◽  
Margot Mütsch ◽  
Julia Braun ◽  
Milo Alan Puhan

BACKGROUND The availability and use of health apps continues to increase, revolutionizing the way mobile health interventions are delivered. Apps are increasingly used to prevent disease, improve well-being, and promote healthy behavior. On a similar rise is the incidence of skin cancers. Much of the underlying risk can be prevented through behavior change and adequate sun protection. Self-monitoring apps have the potential to facilitate prevention by measuring risk (eg, sun intensity) and encouraging protective behavior (eg, seeking shade). OBJECTIVE Our aim was to assess health care consumer preferences for sun protection with a self-monitoring app that tracks the duration and intensity of sun exposure and provides feedback on when and how to protect the skin. METHODS We conducted an unlabeled discrete choice experiment with 8 unique choice tasks, in which participants chose among 2 app alternatives, consisting of 5 preidentified 2-level attributes (self-monitoring method, privacy control, data sharing with health care provides, reminder customizability, and costs) that were the result of a multistep and multistakeholder qualitative approach. Participant preferences, and thus, the relative importance of attributes and their levels were estimated using conditional logit modeling. Analyses consisted of 200 usable surveys, yielding 3196 observations. RESULTS Our respondents strongly preferred automatic over manually operated self-monitoring (odds ratio [OR] 2.37, 95% CI 2.06-2.72) and no cost over a single payment of 3 Swiss francs (OR 1.72, 95% CI 1.49-1.99). They also preferred having over not having the option of sharing their data with a health care provider of their choice (OR 1.66, 95% CI 1.40-1.97), repeated over single user consents, whenever app data are shared with commercial thirds (OR 1.57, 95% CI 1.31-1.88), and customizable over noncustomizable reminders (OR 1.30, 95% CI 1.09-1.54). While most participants favored thorough privacy infrastructures, the attribute of privacy control was a relatively weak driver of app choice. The attribute of self-monitoring method significantly interacted with gender and perceived personal usefulness of health apps, suggesting that female gender and lower perceived usefulness are associated with relatively weaker preferences for automatic self-monitoring. CONCLUSIONS Based on the preferences of our respondents, we found that the utility of a self-monitoring sun protection app can be increased if the app is simple and adjustable; requires minimal effort, time, or expense; and has an interoperable design and thorough privacy infrastructure. Similar features might be desirable for preventive health apps in other areas, paving the way for future discrete choice experiments. Nonetheless, to fully understand these preference dynamics, further qualitative or mixed method research on mobile self-monitoring-based sun protection and broader preventive mobile self-monitoring is required. INTERNATIONAL REGISTERED REPORT RR2-10.2196/16087


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