Governing Personalized Health: A Scoping Review

Trein, Philipp; Wagner, Joël

doi:10.3389/fgene.2021.650504

Cited by 13 publications

(12 citation statements)

References 101 publications

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“…Studies on human biological material (HBM) contribute to the dynamic development of contemporary scientific research, the knowledge of genetic and environmental health determinants, the discovery of new biomarkers and drugs, and the development of personalised medicine ( Hewitt, 2011 ; Paskal et al, 2018 ; Maslagova et al, 2020 ; Trein and Wagner, 2021 ). It seems that a satisfactory level of social awareness and openness to cooperation and biological material donation do not follow the dynamic development of technology and quality in HBM-based research.…”

Section: Introductionmentioning

confidence: 99%

Social differentiation of the perception and human tissues donation for research purposes

et al. 2022

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The willingness to donate human biological material for research purposes is shaped by socio-cultural factors; however, there is a lack of studies analysing the social perception of different human tissues, which may affect such willingness. This study aimed to distinguish different sociocultural categories of human tissues and types of potential donors based on their willingness to donate material. Quantitative research was conducted on a sample of 1,100 adult Poles representative in terms of sex, place of residence and education. According to the study, people were most willing to donate urine (73.9%), blood (69.7%), hair and tears (69.6%) and the least willing to donate post-mortem brain fragments (20%), sperm (males; 36.4%) and egg cells (females; 39.6%). A factor analysis revealed four sociocultural categories of donated tissues: irrelevant, redundant, ordinary and sensitive. Based on these sociocultural categories of tissues, four types of donors were identified: reluctant, highly cooperative, average cooperative and selectively cooperative. The willingness to donate human samples for research is shaped by the sociocultural perception of different body parts and tissues. The lower the sense of “personal relationship” with a specific type of tissue, organ or part of the body, the higher the motivation to donate such biological material for research purposes. Additionally, the willingness to donate is mostly shaped by social trust in physicians and scientists, and potential donors’ engagement in charity activities.

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Section: Introductionmentioning

confidence: 99%

Social differentiation of the perception and human tissues donation for research purposes

et al. 2022

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“…It is very important to establish regulatory frameworks to ensure cooperation and to avoid discrimination and integrate PH into existing healthcare systems. In addition, the development of regulations and standards is truly important for the regulation of the risk, defining responsibility, and protecting individuals from inequalities in personal health [ 11 ].…”

Section: Discussionmentioning

confidence: 99%

Barriers and Facilitators to the Implementation of Personalised Medicine across Europe

Stefanicka-Wojtas

Kurpas

2023

JPM

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(1) Background: Personalised medicine (PM) is an innovative way to produce better patient outcomes by using an individualised or stratified approach to disease and treatment rather than a collective approach to treating patients. PM is a major challenge for all European healthcare systems. This article aims to identify the needs of citizens in terms of PM adaptation, as well as to provide insights into the barriers and facilitators categorised in relation to key stakeholders of their implementation. (2) Methods: This article presents data obtained from the survey “Barriers and facilitators of Personalised Medicine implementation—qualitative study under Regions4PerMed (H2020) project”. Semi-structured questions were included in the above-mentioned survey. The questions included both structured and unstructured segments in an online questionnaire (Google Forms). Data were compiled into a data base. The results of the research were presented in the study. The number of people who participated in the survey can be considered an insufficient sample size for statistical measurement. In order to avoid collecting unreliable data, the questionnaires were sent to various stakeholders of the Regions4PerMed project, which includes members of the Advisory Board of the Regions4PerMed Project, but also speakers of conferences and workshops, and participants in these events. The professional profiles of the respondents are also diverse. (3) Results: The insights on what would help in the adaptation of Personal Medicine to citizen needs have been categorised into 7 areas of need: education; finances; dissemination; data protection/IT/data sharing; system changes/governmental level; cooperation/collaboration; public/citizens. Barriers and facilitators have been categorised into ten key stakeholders of the implementation barriers: government and government agencies; medical doctors/practitioners; healthcare system; healthcare providers; patients and patient organisations; medical sector, scientific community, researchers, stakeholders; industry; technology developers; financial institutions; media. (4) Conclusions: Barriers to the implementation of Personalised Medicine are observed across Europe. The barriers and facilitators mentioned in the article need to be effectively managed in healthcare systems across Europe. There is an urgent need to remove as many barriers as possible and create as many facilitators as possible to implement personalized medicine in the European system.

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“…Governance relates to the level of coordination between public and private sectors involved in policymaking at a national and global level [28]. Key governance-related challenges identified during the expert panels included:…”

Section: Governancementioning

confidence: 99%

“…1. Insufficient harmonization of clinical infrastructures (e.g., data capture through electronic health records and limited laboratory and analytic services) due to the Governance relates to the level of coordination between public and private sectors involved in policymaking at a national and global level [28]. Key governance-related challenges identified during the expert panels included:…”

Section: Governancementioning

confidence: 99%

Identifying the Steps Required to Effectively Implement Next-Generation Sequencing in Oncology at a National Level in Europe

Horgan¹,

Curigliano

Rieß

et al. 2022

JPM

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Next-generation sequencing (NGS) may enable more focused and highly personalized cancer treatment, with the National Comprehensive Cancer Network and European Society for Medical Oncology guidelines now recommending NGS for daily clinical practice for several tumor types. However, NGS implementation, and therefore patient access, varies across Europe; a multi-stakeholder collaboration is needed to establish the conditions required to improve this discrepancy. In that regard, we set up European Alliance for Personalised Medicine (EAPM)-led expert panels during the first half of 2021, including key stakeholders from across 10 European countries covering medical, economic, patient, industry, and governmental expertise. We describe the outcomes of these panels in order to define and explore the necessary conditions for NGS implementation into routine clinical care to enable patient access, identify specific challenges in achieving them, and make short- and long-term recommendations. The main challenges identified relate to the demand for NGS tests (governance, clinical standardization, and awareness and education) and supply of tests (equitable reimbursement, infrastructure for conducting and validating tests, and testing access driven by evidence generation). Recommendations made to resolve each of these challenges should aid multi-stakeholder collaboration between national and European initiatives, to complement, support, and mutually reinforce efforts to improve patient care.

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Governing Personalized Health: A Scoping Review

Cited by 13 publications

References 101 publications

Social differentiation of the perception and human tissues donation for research purposes

Social differentiation of the perception and human tissues donation for research purposes

Barriers and Facilitators to the Implementation of Personalised Medicine across Europe

Identifying the Steps Required to Effectively Implement Next-Generation Sequencing in Oncology at a National Level in Europe

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