Another Best Practice: Leveraging User and Stakeholder Perspectives to Improve and Refine Existing Medical Products.
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ABSTRACT:
SUBMITTER: Peine KJ
PROVIDER: S-EPMC10749654 | biostudies-literature | 2023 Dec
REPOSITORIES: biostudies-literature
Publications
Another Best Practice: Leveraging User and Stakeholder Perspectives to Improve and Refine Existing Medical Products.
Peine Kevin J KJ Fabic Madeleine Short MS Hodgins Stephen S
Global health, science and practice 20231222 6
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Project description:Background Oral HIV pre-exposure prophylaxis (PrEP) is highly effective, but alternative delivery options are needed to reach more users. Microarray patches (MAPs), a novel drug-delivery system containing micron-scale projections or “microneedles” that deliver drugs via skin, are being developed to deliver long-acting HIV PrEP and as a multipurpose prevention technology to protect from HIV and unintended pregnancy. We explored whether MAP technology could meet user and health system needs in two African countries. Methods Researchers in South Africa and Uganda conducted 27 focus group discussions, 76 mock-use exercises, and 31 key informant interviews to explore perceptions about MAPs and specific features such as MAP size, duration of protection, delivery indicator, and health system fit. Participants included young women and men from key populations and vulnerable groups at high risk of HIV and/or unintended pregnancy, including adolescent girls and young women; female sex workers and men who have sex with these women; and men who have sex with men. In Uganda, researchers also recruited young women and men from universities and the community as vulnerable groups. Key stakeholders included health care providers, sexual and reproductive health experts, policymakers, and youth activists. Qualitative data were transcribed, translated, coded, and analyzed to explore perspectives and preferences about MAPs. Survey responses after mock-use in Uganda were tabulated to assess satisfaction with MAP features and highlight areas for additional refinement. Results All groups expressed interest in MAP technology, reporting perceived advantages over other methods. Most participants preferred the smallest MAP size for ease of use and discreetness. Some would accept a larger MAP if it provided longer protection. Most preferred a protection duration of 1 to 3 months or longer; others preferred 1-week protection. Upper arm and thigh were the most preferred application sites. Up to 30 minutes of wear time was considered acceptable; some wanted longer to ensure the drug was fully delivered. Self-administration was valued by all groups; most preferred initial training by a provider. Conclusions Potential users and stakeholders showed strong interest in/acceptance of MAP technology, and their feedback identified key improvements for MAP design. If a MAP containing a high-potency antiretroviral or a MAP containing both an antiretroviral and hormonal contraceptive is developed, these products could improve acceptability/uptake of protection options in sub-Saharan Africa.
| S-EPMC10470907 | biostudies-literature
Project description:BackgroundDengue has emerged as a significant public health issue in Nepal since 2006, necessitating innovative approaches to disseminating timely information and promoting preventive behaviour. Our study focuses on developing and pretesting a mobile health app called NepaDengue, assessing its acceptance and factors influencing its implementation.MethodsA concurrent triangulation mixed-method design was used, and an intervention was conducted among 228 university students using the mobile application. Acceptability was assessed using the technology acceptance model (TAM) based on user experiences over 1 week. Focus group discussions among students and female community health volunteers and key informant interviews among key dengue stakeholders were conducted to explore facilitators and barriers. Descriptive statistics were calculated, and a thematic analysis was conducted.ResultsThe high acceptability mean rating scores reported based on the TAM construct indicate that the application is perceived as useful and easy to use and exhibits good functioning and gestural design. The use of the NepaDengue application for dengue prevention and control activities has been perceived as acceptable by users and stakeholders. However, specific barriers were identified, including concerns about sustained usability, illiteracy and limited access to the internet and smartphones. We suggested promoting the application, fostering government ownership and encouraging collaboration to enhance its reach and effective implementation.ConclusionsThe NepaDengue application has been perceived as a promising tool for dengue prevention and control in Nepal. Further piloting and implementation of the app in the community setting is recommended.
| S-EPMC11816974 | biostudies-literature
Project description:BackgroundHealth research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts.ObjectiveThe aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts. SEARCH STRATEGY, INCLUSION CRITERIA, DATA EXTRACTION AND SYNTHESIS: We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and abstracted data.Main resultsWe identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were "respect" (n = 25, 45%) and "equitable power between all team members" (n = 21, 38%). Creating "trust between patient stakeholders and researchers" was described in 17 (31%) articles. Twenty-seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders' time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement.Discussion and conclusionsEngaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient-centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.
| S-EPMC6543160 | biostudies-literature
Project description:Many disease risk loci identified in genome-wide association studies are present in non-coding regions of the genome. Previous studies have found enrichment of expression quantitative trait loci (eQTLs) in disease risk loci, indicating that identifying causal variants for gene expression is important for elucidating the genetic basis of not only gene expression but also complex traits. However, detecting causal variants is challenging due to complex genetic correlation among variants known as linkage disequilibrium (LD) and the presence of multiple causal variants within a locus. Although several fine-mapping approaches have been developed to overcome these challenges, they may produce large sets of putative causal variants when true causal variants are in high LD with many non-causal variants. In eQTL studies, there is an additional source of information that can be used to improve fine-mapping called allelic imbalance (AIM) that measures imbalance in gene expression on two chromosomes of a diploid organism. In this work, we develop a novel statistical method that leverages both AIM and total expression data to detect causal variants that regulate gene expression. We illustrate through simulations and application to 10 tissues of the Genotype-Tissue Expression (GTEx) dataset that our method identifies the true causal variants with higher specificity than an approach that uses only eQTL information. Across all tissues and genes, our method achieves a median reduction rate of 11% in the number of putative causal variants. We use chromatin state data from the Roadmap Epigenomics Consortium to show that the putative causal variants identified by our method are enriched for active regions of the genome, providing orthogonal support that our method identifies causal variants with increased specificity.
| S-EPMC6952111 | biostudies-literature
Project description:BackgroundManaged problem solving (MAPS) is an evidence-based intervention that can boost HIV medication adherence and increase viral suppression, but it is not widely used in community clinics. Deploying community health workers to deliver MAPS could facilitate broader implementation, in support of the Ending the HIV Epidemic (EHE) initiative's goal of reducing new HIV infections in the US by 90% by 2030.SettingRyan White-funded clinics in Philadelphia, 1 of 48 US counties prioritized in the EHE.MethodsSemistructured stakeholder interviews were conducted with 13 clinics and 4 stakeholder groups: prescribing clinicians, nonprescribing clinical team members (eg, medical case managers), clinic administrators, and policymakers. Interviews were based on the Consolidated Framework for Implementation Research and investigated perceived barriers to and facilitators of MAPS delivery by community health workers. Rapid qualitative analytic techniques were used to synthesize interview data and identify key categories along an implementation pathway. Core determinants (ie, barriers and facilitators) of MAPS implementation were grouped within each category.ResultsStakeholders were receptive to CHW-delivered MAPS and offered critical information on potential implementation determinants including preferences for identification and referral of patients, and the importance of integration and communication within the care team.ConclusionsThis study elucidates insights regarding barriers and facilitators to delivering an evidence-based behavioral intervention in clinics serving people with HIV (PWH) and extends a rapid qualitative approach to HIV care that rigorously incorporates stakeholder data into the development of implementation strategies. It also offers insights for national implementation efforts associated with EHE.
| S-EPMC9473662 | biostudies-literature
Project description:Although pharmacists are entrusted to play a role in ensuring the safe and appropriate use of all medicines, in general, the inclusion of complementary medicines (CMs) into their professional practice has not been observed. The purpose of this study was to explore the perceptions and opinions of pharmacists and 8 key stakeholder leaders regarding the barriers that hinder pharmacists from providing care related to the use of CMs by patients/consumers and to identify solutions that would support pharmacists' in extending their role in this area.Semi-structured key informant interviews were conducted with 2 practicing pharmacists, 1 pharmacy owner, 1 key representative of a pharmacist professional organization, 1 key representative of a consumer advocacy group, 1 key representative of a medical professional organization, 1 key representative from a complementary medicine practitioner professional organization, 1 leader within a pharmacy school, 2 senior staff from a regulatory authority, and 1 key representative of the complementary medicine industry in Australia.A total of 9 barriers were identified in this study. Barriers including a lack of CMs knowledge, doubts about the evidence-base, a lack of research skills and access to reliable and reputable information dominated the discussions. A total of 7 solutions were proposed. Of those, the integration of CMs curricula into under-graduate and professional pharmacy education, and defining a clearer role for pharmacists' standard of practice were considered the most important. Apposing opinions about the role of naturopaths in pharmacies were identified..It is anticipated that pharmacists will be required to formalise a role in ensuring the safe and appropriate use of complementary medicines to fulfil their professional and ethical responsibilities. However, pharmacists in general are not ready to take up this extended role. Individual key stakeholder groups have considered the existing barriers and have proposed solutions that are isolated measures. To facilitate further developments related to CMs and the professional practice of pharmacy, collaborative efforts between key stakeholders are needed to strategically plan and execute an extended role in a unified manner.
| S-EPMC5550952 | biostudies-other
Project description:BackgroundCommunity behavioral health clinicians, supervisors, and administrators play an essential role in implementing new psychosocial evidence-based practices (EBP) for patients receiving psychiatric care; however, little is known about these stakeholders' values and preferences for implementation strategies that support EBP use, nor how best to elicit, quantify, or segment their preferences. This study sought to quantify these stakeholders' preferences for implementation strategies and to identify segments of stakeholders with distinct preferences using a rigorous choice experiment method called best-worst scaling.MethodsA total of 240 clinicians, 74 clinical supervisors, and 29 administrators employed within clinics delivering publicly-funded behavioral health services in a large metropolitan behavioral health system participated in a best-worst scaling choice experiment. Participants evaluated 14 implementation strategies developed through extensive elicitation and pilot work within the target system. Preference weights were generated for each strategy using hierarchical Bayesian estimation. Latent class analysis identified segments of stakeholders with unique preference profiles.ResultsOn average, stakeholders preferred two strategies significantly more than all others-compensation for use of EBP per session and compensation for preparation time to use the EBP (P < .05); two strategies were preferred significantly less than all others-performance feedback via email and performance feedback via leaderboard (P < .05). However, latent class analysis identified four distinct segments of stakeholders with unique preferences: Segment 1 (n = 121, 35%) strongly preferred financial incentives over all other approaches and included more administrators; Segment 2 (n = 80, 23%) preferred technology-based strategies and was younger, on average; Segment 3 (n = 52, 15%) preferred an improved waiting room to enhance client readiness, strongly disliked any type of clinical consultation, and had the lowest participation in local EBP training initiatives; Segment 4 (n = 90, 26%) strongly preferred clinical consultation strategies and included more clinicians in substance use clinics.ConclusionsThe presence of four heterogeneous subpopulations within this large group of clinicians, supervisors, and administrators suggests optimal implementation may be achieved through targeted strategies derived via elicitation of stakeholder preferences. Best-worst scaling is a feasible and rigorous method for eliciting stakeholders' implementation preferences and identifying subpopulations with unique preferences in behavioral health settings.
| S-EPMC7863375 | biostudies-literature
Project description:The rate of screening for colorectal cancer (CRC) in the U.S. remains low (under 65%), meaning that thousands of people die of colorectal cancer unnecessarily. Colorectal cancer screening tests range from more invasive and very sensitive for polyps and cancer (colonoscopy) to less invasive and less sensitive (e.g., fecal immunochemical testing (FIT)). Screening rates go up when patients consider all these tests, not just colonoscopy. Informing patients about their options for CRC screening could produce higher quality decisions, improve the match between patient preferences and tests performed, and increase uptake of CRC screening. Decision aids (DAs) are a promising tool for accomplishing this goal. Also, precision CRC prevention - providing information about an individual’s specific risk for CRC - has great promise to increase uptake and improve decision making.
Unfortunately, the COVID-19 pandemic is causing severe challenges to providing CRC screening and other prevention services. Health systems are trying to adapt, but these efforts have only begun and are poorly understood. Moreover, patient perceptions of disease risk and risk from COVID-19 are unknown.
| 2361924 | ecrin-mdr-crc
Project description:During the coronavirus disease (COVID-19) pandemic, cardiologists have attempted to minimize risks to their patients by using telehealth to provide continuing care. Rapid implementation of video consultations in outpatient clinics for patients with heart disease can be challenging. We employed a design thinking tool called a customer journey to explore challenges and opportunities when using video communication software in the cardiology department of a regional hospital. Interviews were conducted with 5 patients with implanted devices, a nurse, an information technology manager and two cardiologists. Three lessons were identified based on these challenges and opportunities. Attention should be given to the ease of use of the technology, the meeting features, and the establishment of the connection between the cardiologist and the patient. Further, facilitating the role of an assistant (or virtual assistant) with the video consultation software who can manage the telehealth process may improve the success of video consultations. Employing design thinking to implement video consultations in cardiology and to further implement telehealth is crucial to build a resilient health care system that can address urgent needs beyond the COVID-19 pandemic.
| S-EPMC7318925 | biostudies-literature
Project description:ObjectivesTo explore how the self-management of comorbid long-term conditions is experienced and negotiated by people with dementia and their carers.DesignSecondary thematic analysis of 82 semi-structured interviews.SettingCommunity settings across the United Kingdom.Participants11 people with dementia, 22 family carers, 19 health professionals and 30 homecare staff.ResultsWe identified three overarching themes: (1) The process of substituting self-management: stakeholders balanced the wishes of people with dementia to retain autonomy with the risks of lower adherence to medical treatments. The task of helping a person with dementia to take medication was perceived as intermediate between a personal care and a medical activity; rules about which professionals could perform this activity sometimes caused conflict. (2) Communication in the care network: family carers often communicated with services and made decisions about how to implement medical advice. In situations where family carers or homecare workers were not substituting self-management, it could be challenging for general practitioners to identify changes in self-management and decide when to intervene. (3) Impact of physical health on and from dementia: healthcare professionals acknowledged the inter-relatedness of physical health and cognition to adapt care accordingly. Some treatments prescribed for long-term conditions were perceived as unhelpful when not adapted to the context of dementia. Healthcare professionals and homecare workers sometimes felt that family carers were unable to accept that available treatments may not be helpful to people with dementia and that this sometimes led to the continuation of treatments of questionable benefit.ConclusionThe process of substituting self-management evolves with advancement of dementia symptoms and relies on communication in the care network, while considering the impact on and from dementia to achieve holistic physical health management. Care decisions must consider people with dementia as a whole, and be based on realistic outcomes and best interests.
| S-EPMC7545621 | biostudies-literature