Health Democracy Index
KEY FEATURES
COMMUNITY/ GEOGRAPHY
Members of patient associations
People with various chronic health conditions
Cyprus, Greece
COMMUNITY ENGAGEMENT OUTCOMES
Strengthened partnerships + alliances
Diversity + inclusivity
Partnerships + opportunities
Shared power
Improved health + health care programs + policies
Community-aligned solutions
PLACE(S) OF INSTRUMENT USE
Community/community-based organization
LANGUAGE TRANSLATIONS
Not specified
PSYCHOMETRIC PROPERTIES
Construct validity
Convergent validity
Internal consistency reliability
Test-retest reliability
YEAR OF USE
Not specified
Assessment Instrument Overview
The Health Democracy Index (HDI)1,2 has eight questions and is used in health policy. It measures the extent of patient participation in the health policy decision-making process.
Alignment with Assessing Meaningful Community Engagement Conceptual Model
The questions in HDI were realigned to the Assessing Community Engagement Conceptual Model. Figure 1 displays the alignment of HDI with the Conceptual Model domain(s) and indicator(s). Where an instrument is mapped broadly with a domain or with a specific indicator, the figure shows the alignment in blue font.
Table 1 displays the alignment of HDI’s individual questions and validated focus area with the Conceptual Model domain(s) and indicator(s). The table shows, from left to right, the aligned Conceptual Model domain(s) and indicator(s), the individual questions from the HDI transcribed as they appear in the instrument (with minor formatting changes for clarity), and the validated focus area(s) presented in the article.
| CONCEPTUAL MODEL DOMAIN(S) AND INDICATOR(S) | ASSESSMENT INSTRUMENT QUESTIONS | VALIDATED FOCUS AREA(S) |
| STRENGTHENED PARTNERSHIPS + ALLIANCES; Diversity + inclusivity | Does your patient organization take part in
| PA participation |
| STRENGTHENED PARTNERSHIPS + ALLIANCES; Partnerships + opportunities | Does your patient organization take part in workshops or panels
| |
STRENGTHENED PARTNERSHIPS + ALLIANCES; Shared power | Does your patient organization take part in reforms or crucial decisions in health policy? | |
IMPROVED HEALTH + HEALTH CARE PROGRAMS + POLICIES; Community-aligned solutions | Does your patient organization take part in the national parliament during decision-making for important health policies/issues? How often do you observe a substantial change in the content of a health policy decision as a result of interference from a patient organization? (yours or another’s) |
Table 1 | Health Democracy Index questions and alignment with the domain(s) and indicator(s) of the Assessing Community Engagement Conceptual Model
ASSESSMENT INSTRUMENT BACKGROUND
Context of instrument development/use
The article discusses increasing patient awareness concerning participation in health policy decision-making. Patient associations (PAs), defined as not-for profit organizations that are patient-focused with a majority of patients or caregivers represented in the governing bodies (European Patients Forum, “what is a patient organization?), can serve a critical role in “facilitating democracy, promoting patients’ interests, and influencing health policies.” The HDI is a research assessment instrument used to measure patient involvement in the process of health policy decision-making.2
Instrument description/purpose
HDI assesses organizational design, governance, and policy-making using one validated (i.e., construct, convergent) focus area:
- PA participation
HDI has eight questions and uses six-point Likert scales ranging from “absent” to “very high” and “never” to “very often,” as well as a seven-point Likert scale that ranges from “it is not a legal requirement and it never happens” to “it is a legal requirement and it always happens.”2
The HDI instrument can be found here: http://dx.doi.org/10.15171/ijhpm.2016.78.
Engagement involved in developing, implementing, or evaluating the assessment instrument
Once the construct of PA participation in health policy processes were defined, it was reviewed by a panel of 34 stakeholders representing knowledgeable and experienced PA patient members and representatives, health policy makers, health care providers, and researchers. Questions for the HDI were drafted using questions identified in the literature. A focus group on PA participation in health policy processes with 12 PA patient members was conducted, resulting in the development of 10 questions. The initial panel of stakeholder experts who reviewed the construct definition also reviewed and provided comments on the questions. Their input reduced the list of questions to eight. The panel also identified that participation in different aspects of health policy were not of equal importance. These comments led to the assignment of weights to each question in the HDI.2
Additional information on populations engaged in instrument use
Of the 114 participants who completed the survey 19% were men, 80% were women, 64% were married, 72% had high educational level, and 64% were married.2
Notes
- Potential limitations: HDI does not identify or provide context for the barriers PAs may experience or how these barriers may prevent PAs from being effectively involved in health policy decision-making. Understanding these barriers is necessary to improving the “quality and performance of health systems and services as well as the health outcomes of the population.”2
- Important findings: This study of a convenience sample of 114 PA patient members revealed that there was more PA participation in consultations in health-related organizations, the Ministry of Health, and in reforms or crucial decisions in health policy. PA participation was less documented “in hospital boards, Ethics committees for clinical trials, and health technology assessment procedures,” potentially due to a lack of resources, tools, or skills preventing PAs from effectively participating and advocating for the health needs of members.2
- Future research needed: The study and the small number of participants may not be representative of the Cyprus patient population. Future research should explore the type of chronic disease patients have and the influence it may have on PA participation.2
- Supplemental information: Additional research has been conducted using the Health Democracy Index on other populations (i.e., other patient organizations in Greece, France, and Italy; patients with cancer) and to further validate of the scale. The findings from the research can be found in the following articles:
- Souliotis, K., E. Agapidaki, L. E. Peppou, C. Tzavara, D. Varvaras, O. C. Buonomo, D. Debiais, S. Hasurdjiev, and F. Sarkozy. 2018. Assessing Patient Organization Participation in Health Policy: A Comparative Study in France and Italy. International Journal of Health Policy Management 7(1):48-58. https://doi.org/10.15171/ijhpm.2017.44.
- Souliotis, K., L. E. Peppou, E. Agapidaki, C. Tzavara, D. Debiais, S. Hasurdjiev, and F. Sarkozy. 2018. Health democracy in Europe: Cancer patient organization participation in health policy. Health Expectations 21(2):474-484. https://doi.org/10.1111/hex.12638.
- Souliotis, K., L. E. Peppou, E. Agapidaki, and C. Tzavara. 2018. Health Democracy Index: Development and Validation of a Self-Reported Instrument for Measuring Patient Participation in Health Policy. Frontiers of Public Health. https://doi.org/10.3389/fpubh.2018.00194.
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