A roadmap for precision medicine research recruitment: empirical assessment of the public's willingness to participate.
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ABSTRACT:
SUBMITTER: Moriarty K
PROVIDER: S-EPMC8803402 | biostudies-literature | 2020 Sep
REPOSITORIES: biostudies-literature
Publications
A roadmap for precision medicine research recruitment: empirical assessment of the public's willingness to participate.
Moriarty Kelsey K Wolf Susan M SM Veach Patricia M PM LeRoy Bonnie B MacFarlane Ian M IM Zierhut Heather A HA
Personalized medicine 20200817 5
<b>Aim:</b> Precision medicine research recruitment poses challenges. To better understand factors impacting recruitment, this study assessed hypothetical willingness, public opinions of and familiarity with precision medicine research. <b>Materials & methods:</b> Adult attendees (n = 942) at the 2017 Minnesota State Fair completed an electronic survey. <b>Results:</b> Few respondents had heard of 'precision medicine' (18%), and familiarity came mostly from media (43%). Fifty-six percent express ...[more]
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Project description:BackgroundBiobanks/biorepositories are created to collect biospecimens for therapeutic and research uses. The success of the banking concept depends predominantly on the public's understanding and desire to contribute, which triggers several social, cultural, and ethical implications. The aim of this study is (1) to assess the willingness among adults attending outpatient clinics at King Abdulaziz Medical City to donate dental tissue samples to a biorepository for research purposes, (2) to identify the significant predictors for positive attitudes and willingness to donate dental bio-specimens.MethodologyThis is a cross-sectional study that targeted 401 adult outpatients attending King Abdulaziz Medical City in Riyadh, Saudi Arabia. The questionnaire focused on three main parts: demographic and personal characteristics, and previous experience regarding biorepositories (part I), knowledge about dental biorepositories (part II), and willingness and attitudes towards donating dental biospecimens (part III). Data collected were analyzed using the statistical program SAS (version 9.4) with 0.05 level of significance to determine the willingness of donating tissue to biobanks for biomedical research purposes, measure knowledge and attitude about biobanking, find the association between the assessed variables, and identify significant predictors of positive attitude to donate dental biospecimens.Results66% of the participants were willing to donate dental biospecimens, however only 33.9% showed good level of knowledge. Despite the notable lack of knowledge, 54% respondents had favorable attitude towards donating dental biospecimens, and only 17% were negative while the remaining 29% were neutral. Previous involvement in medical research, previous blood testing or donation, female gender, higher education level, employment in a medical facility, and higher monthly income variables were found to be significantly associated with higher willingness to donate dental biospecimens.ConclusionAlthough the majority of the participants exhibited lack of knowledge about dental biorepositories, they showed high willingness and good attitude towards donating dental biospecimens. This favorable attitude is, in turn, encouraging for the future establishment of dental biorepositories in Saudi Arabia. Six factors were significantly associated with the willingness to donate dental biospecimens, out of these, female gender, previous blood testing/donation, previous involvement in medical research were found to be strong predictors.
| S-EPMC9906834 | biostudies-literature
Project description:Current pharmacological treatment of diabetes is largely algorithmic. Other than for cardiovascular disease or renal disease, where sodium-glucose cotransporter 2 inhibitors and/or glucagon-like peptide-1 receptor agonists are indicated, the choice of treatment is based upon overall risks of harm or side effect and cost, and not on probable benefit. Here we argue that a more precise approach to treatment choice is necessary to maximise benefit and minimise harm from existing diabetes therapies. We propose a roadmap to achieve precision medicine as standard of care, to discuss current progress in relation to monogenic diabetes and type 2 diabetes, and to determine what additional work is required. The first step is to identify robust and reliable genetic predictors of response, recognising that genotype is static over time and provides the skeleton upon which modifiers such as clinical phenotype and metabolic biomarkers can be overlaid. The second step is to identify these metabolic biomarkers (e.g. beta cell function, insulin sensitivity, BMI, liver fat, metabolite profile), which capture the metabolic state at the point of prescribing and may have a large impact on drug response. Third, we need to show that predictions that utilise these genetic and metabolic biomarkers improve therapeutic outcomes for patients, and fourth, that this is cost-effective. Finally, these biomarkers and prediction models need to be embedded in clinical care systems to enable effective and equitable clinical implementation. Whilst this roadmap is largely complete for monogenic diabetes, we still have considerable work to do to implement this for type 2 diabetes. Increasing collaborations, including with industry, and access to clinical trial data should enable progress to implementation of precision treatment in type 2 diabetes in the near future.
| S-EPMC9522818 | biostudies-literature
Project description:* To evaluate genome-wide drug variants in the Somali population * To be able to detect pharmacogenetic variants of importance in the Somali populaion * To infer HLA alleles and blood group variants in Somalia
2020-03-19 | E-MTAB-8331 | biostudies-arrayexpress
Project description:ObjectivesTo investigate general practitioners' (GPs') willingness to participate in long-term medical research and in research networks (RNs).Design and settingCross-sectional survey among German GPs around Halle-Wittenberg and Leipzig in 2020.SubjectsRandom sample of 905 GPs.Main outcome measures and resultsResponse rate 37%, 69% female. Overall, 57% were interested in participating in medical research, 34% in an active role in a RN. Interest in RN participation was positively associated with male sex, younger age, previous experiences in medical research, being involved in teaching undergraduates, and having qualification in a further specialty. Main motivators were improving patient care, giving a more realistic picture of GP care, and carrying out research on topics within their own interest areas and a reliable contact person at the leading institution. Most GPs were not afraid of reduced earnings; however, time investment was the main barrier for participation. GPs were willing to dedicate twice as much time to research when remuneration was offered. High rated topics were polypharmacy, chronic diseases, drug safety and adverse drug reactions.ConclusionGPs are interested to participate in practice-based research. The study results providing useful and generalizable insights in barriers and motivators should be considered when building and running GP-RNs.KEY POINTSThere is a difference between general practitioners' (GPs') overall interest in clinical research and their job and socio-demographic related readiness to participate in research networks (RNs).GPs are interested in RNs when it is a resource of and leading to enhanced patient-oriented care.GPs are willing to dedicate twice as much time to research when remunerated.GPs need a reliable counterpart within the leading institution.
| S-EPMC9397419 | biostudies-literature
Project description:Bioelectronic Medicine stands as an emerging field that rapidly evolves and offers distinctive clinical benefits, alongside unique challenges. It consists of the modulation of the nervous system by precise delivery of electrical current for the treatment of clinical conditions, such as post-stroke movement recovery or drug-resistant disorders. The unquestionable clinical impact of Bioelectronic Medicine is underscored by the successful translation to humans in the last decades, and the long list of preclinical studies. Given the emergency of accelerating the progress in new neuromodulation treatments (i.e., drug-resistant hypertension, autoimmune and degenerative diseases), collaboration between multiple fields is imperative. This work intends to foster multidisciplinary work and bring together different fields to provide the fundamental basis underlying Bioelectronic Medicine. In this review we will go from the biophysics of the cell membrane, which we consider the inner core of neuromodulation, to patient care. We will discuss the recently discovered mechanism of neurotransmission switching and how it will impact neuromodulation design, and we will provide an update on neuronal and glial basis in health and disease. The advances in biomedical technology have facilitated the collection of large amounts of data, thereby introducing new challenges in data analysis. We will discuss the current approaches and challenges in high throughput data analysis, encompassing big data, networks, artificial intelligence, and internet of things. Emphasis will be placed on understanding the electrochemical properties of neural interfaces, along with the integration of biocompatible and reliable materials and compliance with biomedical regulations for translational applications. Preclinical validation is foundational to the translational process, and we will discuss the critical aspects of such animal studies. Finally, we will focus on the patient point-of-care and challenges in neuromodulation as the ultimate goal of bioelectronic medicine. This review is a call to scientists from different fields to work together with a common endeavor: accelerate the decoding and modulation of the nervous system in a new era of therapeutic possibilities.
| S-EPMC10911101 | biostudies-literature
Project description:The promise of integrating Electronic Medical Records (EMR) and genetic data for precision medicine has largely fallen short due to its omission of environmental context over time. Post-genomic data can bridge this gap by capturing the real-time dynamic relationship between underlying genetics and the environment. This perspective highlights the pivotal role of integrating EMR and post-genomics for personalized health, reflecting on lessons from past efforts, and outlining a roadmap of challenges and opportunities that must be addressed to realize the potential of precision medicine.
| S-EPMC11833060 | biostudies-literature
Project description:It is difficult to enlist the participation of medical general practitioners (GPs) in research studies. We aimed to determine the willingness of GPs in central Switzerland to participate in research, and to identify factors that facilitate or hinder research participation by GPs. To that end, we conducted a postal questionnaire survey of all 268 active GPs in the canton of Lucerne. The survey explored their interest in participating in research projects (yes/no) and factors that potentially influence their participation (5-point Likert scale from "very important" to "not at all important"). We contacted all non-responders by phone. Background information of the GPs was retrieved from the database of the cantonal association of physicians. Associations between willingness to participate in research and GP's age, gender, type and location of practice, and the perceived relevance of facilitators were investigated via multiple logistic regression. Out of 268 GPs, 115 (43%) agreed to be contacted for future research projects. Willingness was associated with age (willing: 55% ≤ 40 y vs. 33% > 60 y) and gender (44% male vs. 38% female), and to some degree with the type of practice (50% group vs. 31% single), and location (46% urban vs. 38% rural), independently from each other. Scientists should develop methods to motivate and support GPs in single and rural practices to participate so research is representative of primary care as a whole.
| S-EPMC6396922 | biostudies-literature
Project description:ImportanceUsing social media to recruit participants is a common and cost-effective practice. Willingness to participate (WTP) in biomedical research is a function of trust in the scientific team, which is closely tied to the source of funding and institutional connections.ObjectiveTo determine whether WTP and willingness to share social media data are associated with the type of research team and online recruitment platform.Design, setting, and participantsThis mixed-methods longitudinal survey and qualitative study was conducted over 2 points (T1 and T2) using Amazon's Mechanical Turk (MTurk) platform. Participants were US adults aged 18 years or older who use at least 1 social media platform. Recruitment was stratified to match race/ethnicity proportions of the 2010 US Census. The volunteer sample consisted of 914 participants at T1, and 655 participants completed the follow-up survey 5 months later (T2).Main outcomes and measuresOutcomes were (1) past experience with online research and sharing social media data for research; (2) WTP in research advertised online; (3) WTP in a study sponsored by a pharmaceutical company, a university, or a federal agency; and (4) willingness to share social media data. Opinions were solicited regarding the European Union's General Data Protection Regulation statute, which came into effect between T1 and T2.ResultsOf 914 participants completing the first survey (T1), 604 (66.1%) were aged 18 to 39 years and 494 (54.0%) were female. Of these, 655 participants (71.7%) responded at T2. While 680 participants (74.4%) indicated WTP in biomedical research, only 454 (49.3%) were willing to share their social media data. Participants were significantly less likely to participate in federally sponsored (odds ratio [OR], 0.58; 95% CI, 0.51-0.64; P < .001) or pharmaceutical company (OR, 0.59; 95% CI, 0.53-0.66; P < .001) research than university-led studies. They were also less likely to share their social medial data for federal (OR, 0.65; 95% CI, 0.58-0.72; P < .001) or pharmaceutical company (OR, 0.50; 95% CI, 0.44-0.56; P < .001) research compared with academic studies. Willingness to participate in pharmaceutical company-led research decreased 11.89% from T1 to T2 (OR for T2, 0.62; 95% CI, 0.54-0.77; P < .001). Reasons for WTP were interest in furthering science, financial incentives, trust in the organization, and data security. While 63.0% of respondents reported seeing new privacy policy emails related to the General Data Protection Regulation law, only 27.1% indicated this positively influenced their WTP. Thematic analysis of responses indicated that WTP may improve with stronger data security measures.Conclusions and relevanceThis study suggests that researchers may see reduced online research participation and data sharing, particularly for research conducted outside academia.
| S-EPMC6902809 | biostudies-literature
Project description:BackgroundThe intersection of emergency medicine (EM) and palliative care (PC) has been recognized as an essential area of focus, with evidence suggesting that increased integration improves outcomes. This has resulted in increased research in EM PC. No current framework exists to help guide investigation and innovation.ObjectiveThe objective was to convene a working group to develop a roadmap that would help provide focus and prioritization for future research.MethodsParticipants were identified based on clinical, operation, policy, and research expertise in both EM and PC and spanned physician, nursing, social work, and patient perspectives. The research roadmap setting process consisted of three distinct phases that were time staggered over 12 months and facilitated through three live video convenings, asynchronous input via an online document, and a series of smaller video convenings of work groups focused on specific topics.ResultsGaps in the literature were identified and informed the four key areas for future research. Consensus was reached on these domains and the associated research questions in each domain to help guide future study. The key domains included work focused on the value imperative for PC in the emergency setting, models of care delivery, disparities, and measurement of impact and efficacy. Additionally, the group identified key methodological considerations for doing work at the intersection of EM and PC.ConclusionsThere are several key domains and associated questions that can help guide future research in ED PC. Focus on these areas, and answering these questions, offers the potential to improve the emergency care of patients with PC needs.
| S-EPMC11298868 | biostudies-literature
Project description:BackgroundMotor impairment and travel time have been shown to be important barriers to recruitment for Parkinson's disease (PD) clinical trials. This study determined whether use of Internet-based video communication for study visits would improve likelihood of participating in PD clinical trials.Subjects and methodsUniversity of Utah PD clinic patients were invited to complete a survey asking if they would be willing to participate in a hypothetical research study under four different scenarios. McNemar's test was used to test the hypothesis that remote assessments would improve willingness to participate.ResultsWillingness to participate was 101/113 (87%) in the standard scenario. Willingness to participate was highest (93%; p=0.046) with most visits occurring via telemedicine at a local clinic, followed by some visits occurring via telemedicine at a local clinic (91%; p=0.157). Willingness to participate was lower with some (80%; p=0.008) or most (82%; p=0.071) visits occurring by home telemonitoring.ConclusionsUse of telemedicine may be an acceptable means to improve participation in clinical trials. This would need to be confirmed with the use of a larger-scale inquiry involving rural populations. Future research should assess subject or caregiver comfort and trainability with respect to computer-based technology in the home and systems barriers for wider implementation of telemedicine in neurology.
| S-EPMC3491628 | biostudies-literature