@article{3180752,
    title = "Health Democracy Index: Development and Validation of a Self-Reported
Instrument for Measuring Patient Participation in Health Policy",
    author = "Souliotis, Kyriakos and Peppou, Lily E. and Agapidaki, Eirini and and Tzavara, Chara",
    journal = "Frontiers in public health",
    year = "2018",
    volume = "6",
    publisher = "Frontiers Media SA",
    issn = "2296-2565",
    doi = "10.3389/fpubh.2018.00194",
    keywords = "scale development; patient participation; patient empowerment; patient
organizations; health policy decision making",
    abstract = "Introduction: Patient participation has emerged as a preponderant theme
in contemporary health and healthcare; however there is a dearth of
research on the degree and impact of collective patient participation on
shaping health policy. In this frame, the current study endeavored to
validate a scale for assessing patients' association (PA) participation
in health policy processes. Furthermore, PAs' participation in health
policy decision making in Greece was explored.
Materials and Methods: The Health Democracy Index (HDI) is an eight-item
scale enquiring about PAs' participation in important facets of health
policy. To investigate its psychometric properties, 414 members of PAs
in Greece were randomly recruited. By employing a self-reported
questionnaire, construct validity was examined through exploratory and
confirmatory factor analysis, while convergent validity was investigated
through an additional question asking respondents to rate the degree of
their association's participation in health policy processes. Moreover,
the internal consistency of the scale and its test-retest reliability
were explored.
Results: The scale showed high internal consistency (Cronbach a = 0.85)
and test-retest reliability (ICC = 0.89, p < 0,001). Exploratory factor
analysis suggested a unidimensional construct; while confirmatory factor
analysis indicated an adequate fit of the one-factor model (RMSEA =
0.079, CFI = 0.976, and GFI=0.972). Regarding convergent validity, the
HDI composite score displayed strong and positive correlation with the
item asking respondents to rate the degree of PA participation in health
policy processes (rho = 0.73, p < 0.0001). Concerning the pattern of
results in Greece, PAs' participation was found to be low. The lowest
level was observed for the item enquiring about PA participation in the
national parliament and the highest for panels at influential
health-related organizations.
Conclusion: The HDI is a valid and reliable tool that can be utilized to
serve policy-related as well as research purposes. PAs' participation in
Greece is weak and thus efforts should be made to enhance it."
}