Access to health care for patients with thalassaemia in Greece: a cross-sectional study.

BACKGROUND: The prevalence and clinical burden of beta-thalassaemia in Greece is high. Little information is available on the unmet needs of patients with beta-thalassaemia and barriers to access to care. AIMS: This study investigated barriers that patients with transfusion-dependent beta-thalassaemia in Greece face when accessing care and the associations between socioeconomic factors and access to care. METHODS: A cross-sectional study was conducted between November 2018 and January 2019. The sample consisted of 116 beta-thalassaemia patient-members of two Panhellenic patient associations for people with thalassaemia. All respondents were transfusion-dependent. The survey customized and used the Patient Access Partnership 5As of access tool to measure participants' access to health care services (subscales: accessibility, adequacy, affordability, appropriateness and availability). Data on their socioeconomic characteristics were also recorded. The association between the total score of each subscale and patient characteristics was examined using the Mann-Whitney or Kruskal-Wallis tests. RESULTS: Respondents considered inpatient services less adequate and appropriate, and outpatient services and laboratory tests less affordable. Outpatient services were also perceived as less available. Participants' income was statistically significantly associated with all the subscales except accessibility, and rural residence was significantly associated with all five subscales. CONCLUSION: Barriers in access to health care among beta-thalassaemia patients receiving transfusions still persist, especially for those who live far from transfusion centres and have lower incomes. It is important to understand and map current unmet medical and social needs of beta-thalassaemia patients in Greece, in order to design and implement a targeted health policy that can measurably improve patients' lives.

Cancer patients' organisation participation in heath policy decision-making: a snapshot/cluster analysis of the EU-28 countries.

OBJECTIVES: Even though patient involvement in health policy decision-making is well documented, studies evaluating the degree and impact of this participation are scarce. This is even more conspicuous in the case of cancer. There is evidence showing that patients with the same type of cancer and at the same stage of the disease will receive different treatments in different countries. Therefore, it is crucial to assess the degree of patient participation in health policy decision-making across Europe, as it may result in health inequalities across countries. In a response to this research call, the present study aimed to provide a snapshot of cancer patients' organisation (CPO) participation in health policy processes in European Union (EU)-28 countries. SETTING: CPOs from the EU-28 countries. PARTICIPANTS: Primary and secondary outcome measures: information about participants' sociodemographic characteristics and their involvement in their CPO was collected as well as data about the CPO. A 17-item index containing questions about the type and impact of participation in various facets of health policy decision-making was used to assess the degree of CPOs participation in health policy decision-making processes and its impact.

Assessing Patient Organization Participation in Health Policy: A Comparative Study in France and Italy.

BACKGROUND: Even though there are many patient organizations across Europe, their role in impacting health policy decisions and reforms has not been well documented. In line with this, the present study endeavours to fill this gap in the international literature. To this end, it aims to validate further a previously developed instrument (the Health Democracy Index - HDI) measuring patient organization participation in health policy decision-making. In addition, by utilizing this tool, it aims to provide a snapshot of the degree and impact of cancer patient organization (CPO) participation in Italy and France. METHODS: A convenient sample of 188 members of CPOs participated in the study (95 respondents from 10 CPOs in Italy and 93 from 12 CPOs in France). Participants completed online a self-reported questionnaire, encompassing the 9-item index and questions enquiring about the type and impact of participation in various facets of health policy decisionmaking. The psychometric properties of the scale were explored by performing factor analysis (construct validity) and by computing Cronbach α (internal consistency). RESULTS: Findings indicate that the index has good internal consistency and the construct it taps is unidimensional. The degree and impact of CPO participation in health policy decision-making were found to be low in both countries; however in Italy they were comparatively lower than in France. CONCLUSION: In conclusion, the HDI can be effectively used in international policy and research contexts. CPOs participation is low in Italy and France and concerted efforts should be made on upgrading their role in health policy decision-making.

Health democracy in Europe: Cancer patient organization participation in health policy.

BACKGROUND: Patient organization participation in health policy decision making is an understudied area of inquiry. A handful of qualitative studies have suggested that the growing number of patient organizations in Europe and their increasing involvement in policy issues do not result in high political effectiveness. However, existing research is largely country-specific. OBJECTIVE: To examine the degree and impact of cancer patient organization (CPO) participation in health policy decision making in EU-28 and to identify their correlates. METHODS: A total of 1266 members of CPOs participated in this study, recruited from a diversity of sources. CPO participation in health policy was assessed with the Health Democracy Index, a previously developed instrument measuring the degree and impact of patient organization participation in various realms of health policy. Additional questions collected information about participants' and the CPO's characteristics. Data were gleaned in the form of an online self-reported instrument. RESULTS: The highest degree of CPO participation was observed with respect to hospital boards, reforms in health policy and ethics committees for clinical trials. On the contrary, the lowest was discerned with regard to panels in other important health-related organizations and in the Ministry of Health. The reverse pattern of results was observed concerning the Impact subscale. As regards the correlates of CPO participation, legislation bore the strongest association with the Degree subscale, while organizational factors emerged as the most important variables with regard to the Impact subscale. CONCLUSIONS: Research findings indicate that a high degree of CPO participation does not necessarily ensure a high impact. Efforts to promote high and effective CPO participation should be geared towards the establishment of a health-care law based on patient rights as well as to the formation of coalitions among CPOs and the provision of training to its members.

For the Many, Not the Few: Patient Empowerment.

Today's patients are more knowledgable than ever before and should be placed at the centre of their own healthcare decisions. Empowering the patient is, and always will be, a fundamental pillar of personalised medicine. Front-line healthcare professionals cannot treat a patient properly without taking into account his or her perceptions of value. They cannot treat a patient properly without taking into account that patient's lifestyle and, of course, they cannot treat a patient properly without creating equal access across the EU to the best possible treatments available. The authors of this article examine ways to enhance the empowerment of Europe's patients.