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1.
J Cancer Surviv ; 17(4): 1094-1110, 2023 08.
Article in English | MEDLINE | ID: mdl-36367615

ABSTRACT

PURPOSE: This study is to evaluate healthcare needs, preferences, and expectations in supportive cancer care as perceived by cancer survivors, family caregivers, and healthcare professionals. METHODS: Key stakeholders consisted of cancer survivors diagnosed with breast cancer, prostate cancer, or melanoma; adult family caregivers; and healthcare professionals involved in oncology. Recruitment was via several routes, and data were collected via either online surveys or telephone interviews in Greece, Spain, Sweden, and the UK. Framework analysis was applied to the dataset. RESULTS: One hundred and fifty-five stakeholders participated: 70 cancer survivors, 23 family caregivers, and 62 healthcare professionals (13 clinical roles). Cancer survivors and family caregivers' needs included information and support on practical/daily living, as frustration was apparent with the lack of follow-up services. Healthcare professionals agreed on a multidisciplinary health service with a "focus on the patient" and availability closer to home. Most healthcare professionals acknowledged that patient-reported outcomes may provide "better individualised care". Cancer survivors and family caregivers generally felt that the digital platform would be useful for timely personalised support and aided communication. Healthcare professionals were supportive of the "proactive" functionality of the platform and the expected advantages. Anticipated challenges were integration obstacles such as workload/infrastructure and training/support in using the new technology. CONCLUSIONS: Obtaining key stakeholders' insights provided a foundation for action to further co-create the LifeChamps digital platform to meet needs and priorities and deliver enhanced supportive care to "older" cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: Co-creation provided insight into gaps where digital support may enhance health and well-being.


Subject(s)
Breast Neoplasms , Cancer Survivors , Adult , Male , Humans , Motivation , Caregivers , Delivery of Health Care
2.
Acta Inform Med ; 28(1): 58-64, 2020 Mar.
Article in English | MEDLINE | ID: mdl-32210517

ABSTRACT

INTRODUCTION: NCDs (non-communicable diseases) are considered an important social issue and a financial burden to the health care systems in the EU which can be decreased if cost-effective policies are implemented, along with proactive interventions. The CrowdHEALTH project recognizes that NCD poses a burden for the healthcare sector and society and aims at focusing on NCDs' public health policies. AIM: The aim of this paper is to present the concept of Public Health Policy (PHP), elaborate on the state-of-the-art of PHPs development, and propose a first approach to the modeling and evaluation of PHPs used in a toolkit that is going to support decision making, the Policy Development Toolkit (PDT). METHODS: The policy creation module is a part of the PDT aiming to integrate the results of the rest of the health analytics and policy components. It is the module that selects, filters, and aggregates all relevant information to help policy-makers with the decision making process. The policies creation component is connected to the visualization component to provide the final users with data visualization on different PHPs, including outcomes from data-driven models, such as risk stratification, clinical pathways mining, forecasting or causal analysis models, outcomes from cost-benefit analysis, and suggestions and recommendations from the results of different measured KPIs, using data from the Holistic Health Records (HHRs). RESULTS: In the context of CrowdHEALTH project, PHP can be defined as the decisions taken for actions by those responsible in the public sector that covers a set of actions or inactions that affect a group of public and private actors of the health care system. In the CrowdHEALTH project, the Policy Development Toolkit works as the main interface between the final users and the whole system in the CrowdHEALTH platform. The three components related to policy creation are: (i) the policy modeling component, (ii) the population identification component and (iii) the policy evaluation component. In policy evaluation, KPIs are used as measurable indicators to help prevent ambiguity problems in the interpretation of the model and the structure. CONCLUSIONS: This initial Policy creation component design might be modified during the project life circle according to the concept complexity.

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