Systems medicine is based on approaches taken from systems biology, omics research, bio-informatics and network theory. It promises to facilitate a better understanding of the causes of diseases, detection at an earlier stage, and the use of tailor-made approaches to prevention and therapy. This study provides information on how systems medicine could be incorporated into the German healthcare system. In a Policy Delphi, consensus and divergence was elicited on whether experts believed systems medicine could be incorporated into the German healthcare system by 2030. Additionally, factors that could influence the implementation process were analysed. 11 theses on potential systems medicine developments and 193 arguments on influencing factors were evaluated. Experts from health and health-related fields were selected using "purposive sampling". The experts interviewed expressed their trust in the provision of a legal-political framework, though they remained uncertain as to whether the necessary social discourse on the ethical and cultural questions surrounding systems medicine would occur. They do not (currently) expect systems medicine to be implemented by 2030. Systems medicine is currently regarded as a visionary concept. As such, it would be premature to attempt to judge the success of the translation process at this stage. The results can help with the identification of the challenges involved in implementation, and the action required to achieve this aim.
The implementation of health technology assessment (HTA) in emerging countries depends on the characteristics of the health care system and the needs of public health care. The objective of this survey was to investigate experts’ expectations for the development of HTA in Brazil and to derive measures to strengthen the impact of HTA in Brazil on health care decisions. Based on a scoping literature review, a questionnaire was developed proposing eight theses for seven domains of HTA: (i) capacity building, (ii) public involvement, (iii) role of cost-effectiveness analysis (CEA), (iv) institutional framework, (v) scope of HTA studies, (vi) methodology of HTA, and (vii) HTA as the basis for jurisdiction. Thirty experts responded in full to the survey and agreed to five of the eight theses proposed. Experts suggested several measures to promote HTA within the scope of each domain, thus addressing capacity building related to HTA, availability, and reliability of population data, and legal endowment of the HTA system. Finally, HTA processes in Brazil should also address public health issues (e.g., appraisal of interventions directed at chronic diseases).
Advances in (bio)medicine and technological innovations make it possible to combine high-dimensional, heterogeneous health data to better understand causes of diseases and make them usable for predictive, preventive, and precision medicine. This study aimed to determine views on and expectations of “systems medicine” from the perspective of citizens and patients in six focus group interviews, all transcribed verbatim and content analyzed. A future vision of the use of systems medicine in healthcare served as a stimulus for the discussion. The results show that although certain aspects of systems medicine were seen positive (e.g., use of smart technology, digitalization, and networking in healthcare), the perceived risks dominated. The high degree of technification was perceived as emotionally burdensome (e.g., reduction of people to their data, loss of control, dehumanization). The risk-benefit balance for the use of risk-prediction models for disease events and trajectories was rated as rather negative. There were normative and ethical concerns about unwanted data use, discrimination, and restriction of fundamental rights. These concerns and needs of citizens and patients must be addressed in policy frameworks and health policy implementation strategies to reduce negative emotions and attitudes toward systems medicine and to take advantage of its opportunities.
Hereditary breast cancer accounts for approximately 30% of newly diagnosed breast cancer (BC) cases. Pathogenic variants in moderate-risk BC genes (MBCG) differ from those in high-risk genes in terms of associated cancer risks, affected organs, and available preventive options. Little is known about how MBCG pathogenic variant carriers who have attended post-test genetic counseling perceive their situation, how they cope with their situation, and which support needs they might have. Problem-centered, guided, individual interviews were conducted with twelve women carrying pathogenic variants in MBCG. The interview analysis was based on Mayring’s qualitative content analysis. The women were between 29 and 59 years old and carried pathogenic variants in the risk genes CHEK2 (n = 8), ATM (n = 1), or PALB2 (n = 3). Women reported a wide range of feelings, both positive (relief, calmness) and negative (overwhelm, fear, grief, guilt). All women applied strategies of emotion-focused coping to deal with this lifelong situation. Appraisal and evaluation of the affected mother’s coping might influence the patient’s own behavior and coping style. These results could be used during and after post-test genetic counseling to provide more needs-oriented counseling, and to help women in adjusting to and coping with being a pathogenic variant carrier.
17 November 2023 in Journal of Healthcare Quality Research
Background: Internationally, the need for appropriately structured, high-quality care in psycho-oncology is more and more recognized and quality-oriented care is to be established. Quality indicators are becoming increasingly important for a systematic development and improvement of the quality of care. The aim of this study was to develop a set of quality indicators for a new form of care, a cross-sectoral psycho-oncological care program in the German health care system. Methods: The widely established RAND/UCLA Appropriateness Method was combined with a modified Delphi technique. A systematic literature review was conducted to identify existing indicators. All identified indicators were evaluated and rated in a two-round Delphi process. Expert panels embedded in the Delphi process assessed the indicators in terms of relevance, data availability and feasibility. An indicator was accepted by consensus if at least 75% of the ratings corresponded to category 4 or 5 on a five-point Likert scale. Results: Of the 88 potential indicators derived from a systematic literature review and other sources, 29 were deemed relevant in the first Delphi round. After the first expert panel, 28 of the dissented indicators were re-rated and added. Of these 57 indicators, 45 were found to be feasible in terms of data availability by the second round of expert panel. In total, 22 indicators were transferred into a quality report, implemented and tested within the care networks for participatory quality improvement. In the second Delphi round, the embedded indicators were tested for their practicability. The final set includes 16 indicators that were operationalized in care practice and rated by the expert panel as relevant, comprehensible, and suitable for care practice. Conclusion: The developed set of quality indicators has proven in practical testing to be a valid quality assurance tool for internal and external quality management. The study findings could contribute to traceable high quality in cross-sectoral psycho-oncology by providing a valid and comprehensive set of quality indicators. Trial registration: “Entwicklung eines Qualitätsmanagementsystems in der integrierten, sektorenübergreifenden Psychoonkologie—AP “Qualitätsmanagement und Versorgungsmanagement” zur Studie "integrierte, sektorenübergreifende Psychoonkologie (isPO)" a sub-project of the “integrierte, sektorenübergreifende Psychoonkologie (isPO)”, was registered in the German Clinical Trials Register (DRKS) (DRKS-ID: DRKS00021515) on 3rd September 2020. The main project was registered on 30th October 2018 (DRKS-ID: DRKS00015326).