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A family genetic risk communication framework: guiding tool development in genetics health services.

ABSTRACT: Family communication of genetic risk information is a complex process. Currently, there are no evidence-based interventions to help genetics professionals facilitate the process of disclosure within families. This study was designed to create a framework to assist in the development of tools to support patients in communicating genetic risk information to family members. A systematic review identified the factors relevant in communicating genetic risk information in families. A guiding theory for the proposed framework was selected and populated with the factors identified from the review. The review identified 112 factors of relevance. The theory of planned behaviour was selected to guide framework development, organising the framework in terms of the patient's attitudes about disclosure, perceived pressure to disclose and perceived control over disclosure. Attitudes about disclosure are influenced by a desire to protect oneself or family members, and the patient's perceptions of relevance of the information for family members, responsibility to disclose, family members' rights to information and the usefulness of communicating. Perceived pressure to disclose information is shaped by genetic professionals, family members and society. Perceived control over disclosure is affected by family relationships/dynamics, personal communication skills, the ability of the patient and family to understand the information and coping skills of the patient and family member. The family genetic risk communication framework presents a concise synthesis of the evidence on family communication of genetic information; it may be useful in creating and evaluating tools to help genetic counsellors and patients with communication issues.

SUBMITTER: Wiens ME

PROVIDER: S-EPMC3666832 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundThe online offer of commercial genetic tests, also called direct-to-consumer genetic tests (DTC-GTs), enables citizens to gain insight into their health and disease risk based on their genetic profiles. DTC-GT offers often consist of a combination of services or aspects, including advertisements, information, DNA analysis, and medical or lifestyle advice. The risks and benefits of DTC-GT services have been debated and studied extensively, but instruments that assess DTC-GT services and aid policy are lacking. This leads to uncertainty among policy makers, law enforcers, and regulators on how to ensure and balance both public safety and autonomy and about the responsibilities these 3 parties have toward the public.ObjectiveThis study aimed to develop a framework that outlines aspects of DTC-GTs that lead to policy issues and to help provide policy guidance regarding DTC-GT services.MethodsWe performed 3 steps: (1) an integrative literature review to identify risks and benefits of DTC-GT services for consumers and society in Embase and Medline (January 2014-June 2022), (2) structuring benefits and risks in different steps of the consumer journey, and (3) development of a checklist for policy guidance.ResultsPotential risks and benefits of DTC-GT services were mapped from 134 papers and structured into 6 phases. In summary, these phases were called the consumer journey: (1) exposure, (2) pretest information, (3) DNA analysis, (4) data management, (5) posttest information, and (6) individual and societal impact. The checklist for evaluation of DTC-GT services consisted of 8 themes, covering 38 items that may raise policy issues in DTC-GT services. The themes included the following aspects: general service content, validity and quality assurance, potential data and privacy risks, scientific evidence and robustness, and quality of the provided information.ConclusionsBoth the consumer journey and the checklist break the DTC-GT offer down into key aspects that may impact and compromise individual and public health, safety, and autonomy. This framework helps policy makers, regulators, and law enforcers develop methods to interpret, assess, and act in the DTC-GT service market.

Project description:BackgroundIn Thailand, pharmacists are responsible for all activities to ensure access to medicines throughout pharmaceutical supply chain. Competency framework (CF) is an important guidance for professional development and workforce planning.ObjectiveThis study aimed to explore needs for pharmacy services in pharmaceutical supply chain and competencies of pharmacists to serve those needs. It was the first step for developing evidence-based pharmacy CF within the context of Thailand in 2026.MethodsA qualitative method using in-depth interviews to gain rich data from practitioners and leaders in all area of practices. 99 key informants from 56 workplaces in Thailand were interviewed during January and March 2016. Data was transcribed verbatim, and thematic analysis was used. Competencies were extracted, followed by several rounds of group discussion among team members to develop an initial framework. The competencies and CF were presented, and recommendations were gained from professional leaders for refining the findings.ResultsThe key informants agreed that pharmacist's works and responsibilities have gradually been drifted to support changes in healthcare and pharmaceutical systems. The upcoming pharmaceutical services call for higher standards of practice, larger number of personnel, and skillful pharmacists who have strong foundation in pharmaceutical knowledge as well as an ability to integrate knowledge into practices. Two sets of CFs were established. The general CF comprises five core domains: product focus, patient focus, healthcare system focus, community focus, and personal focus for self-improvement. These general competencies allow practitioners to perform basic professional tasks, including providing information, dispensing, and compounding. The service-specific competency is the integration of general competencies tailored into specific area of practice.ConclusionsRegarding the professional goal to evolve pharmacists from generalists to specialists for providing higher quality of professional services, the pharmacists are required to demonstrate general competencies and service-specific competencies. The findings serve as the need-based evidence for developing a national CF for pharmacists in Thailand.

Project description:BACKGROUND:Connected health (CH), as a new paradigm, manages individual and community health in a holistic manner by leveraging a variety of technologies and has the potential for the incorporation of telehealth and integrated care services, covering the whole spectrum of health-related services addressing healthy subjects and chronic patients. The reorganization of services around the person or citizen has been expected to bring high impact in the health care domain. There are a series of concerns (eg, contextual factors influencing the impact of care models, the cost savings associated with CH solutions, and the sustainability of the CH ecosystem) that should be better addressed for CH technologies to reach stakeholders more successfully. Overall, there is a need to effectively establish an understanding of the concepts of CH impact. As services based on CH technologies go beyond standard clinical interventions and assessments of medical devices or medical treatments, the need for standardization and for new ways of measurements and assessments emerges when studying CH impact. OBJECTIVE:This study aimed to introduce the CH impact framework (CHIF) that serves as an approach to assess the impact of CH services. METHODS:This study focused on the subset of CH comprising services that directly address patients and citizens on the management of disease or health and wellness. The CHIF was developed through a multistep procedure and various activities. These included, as initial steps, a literature review and workshop focusing on knowledge elicitation around CH concepts. Then followed the development of the initial version of the framework, refining of the framework with the experts as a result of the second workshop, and, finally, composition and deployment of a questionnaire for preliminary feedback from early-stage researchers in the relevant domains. RESULTS:The framework contributes to a better understanding of what is CH impact and analyzes the factors toward achieving it. CHIF elaborates on how to assess impact in CH services. These aspects can contribute to an impact-aware design of CH services. It can also contribute to a comparison of CH services and further knowledge of the domain. The CHIF is based on 4 concepts, including CH system and service outline, CH system end users, CH outcomes, and factors toward achieving CH impact. The framework is visualized as an ontological model. CONCLUSIONS:The CHIF is an initial step toward identifying methodologies to objectively measure CH impact while recognizing its multiple dimensions and scales.

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A family genetic risk communication framework: guiding tool development in genetics health services.

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