Pre-conference: Bridging gaps in health monitoring: innovative approaches to obtain data from hard-to-reach populations

Tuesday 12 November, 9:00 – 17:00 Lisbon time (including network lunch)

Organised by

EUPHA Sections on Public health monitoring and reporting (PHMR), Migrant and ethnic minority health (MIGR), Public health policy and politics (PHPP), Sexual and gender minority health (SGMH)

Background

This pre-conference seeks to explore innovative strategies for collecting health monitoring data from hard-to-reach populations, including young adults, elderly with limited cognitive capacity, prisoners and other institutionalized persons, migrants, and various minority groups, such as sexual minorities.

Comprehensive and inclusive data on the health of the population and all population groups is essential to support policy making, and development and implementation of well targeted and cost-effective interventions. However, obtaining accurate and representative data from certain population groups poses significant challenges. Traditional health surveys are known to suffer from non-response bias especially since non-response is often selective among population groups such as younger age groups, men, very old age groups, migrants, and people with lower socioeconomic position. Also, administrative registers, such as electronic health records suffer from population representativeness. These registers include only those who have been seeking and/or obtained medical care, and don’t cover unmet need for health care or undiagnosed cases. Therefore, novel approaches that integrate administrative registers and population surveys are needed.

For example, young adults tend to pose challenges for health monitoring data collection due to their rapidly changing lifestyles and a reluctance to participate with traditional health surveys. Here further use of new technologies, social media and trying to reach them through educational institutions could be considered. They also often feel themselves healthy and don’t have regular contacts with health care services, therefore underlying, asymptomatic diseases such as hypertension are not recorded in health records. On the other hand, elderly population are prone to physical and cognitive decline which may impact their capabilities to participate in population surveys, both physically, but also in some cases due to limited mental capabilities. For some information, proxy respondents might be a solution but also possibilities for home visits and other tailored approached are needed. On the other hand, they are a population group which often have visit health care professionals regularly. Therefore, linking survey data with administrative information can provide enriched information on them.

We must also consider prisoners and other people living in institutionalized settings such as care homes. In case of survey data collection, these people are often not part of the sampling frame or are intentionally excluded from the sampling frame due to limited access to these facilities, confidentiality, and safety issues, and possibly even stigma. To reach these population groups, intersectoral collaboration with different actors is required and possibly survey methods need to be specifically tailored for these settings.

Migrants and other minority groups are often underrepresented in the health surveys unless oversampling among them is done or the survey is specifically focused on these groups. Even then, response rates have a tendency to be lower than for the general population, which may be due to language problems but also in some groups due to lack of trust in authorities. The possibility of using community-based approaches and trying to culturally adapt survey methods are essential here. For the same reasons, even in countries with universal, free health care, migrants and other minority groups may not seek medical care when needed, i.e. administrative registers are lacking information on them.

Objectives

Main objectives of this pre-conference are to:

1. Identify and understand challenges. Explore the specific challenges associated with obtaining health monitoring data from hard-to-reach populations, emphasizing the unique characteristics of each group.
2. Evaluate existing strategies. Assess the effectiveness of current strategies in health monitoring data collection for hard-to-reach populations, examining both successes and limitations.
3. Promote innovative approaches. Propose and discuss innovative and context-specific methods for collecting health data, considering technological advancements, community engagement, and collaborations with relevant institutions.
4. Facilitate knowledge exchange. Foster a collaborative environment for the exchange of experiences, best practices, and lessons learned among researchers, practitioners, and policymakers working with hard-to-reach populations.
5. Address data quality and reliability. Discuss methodologies to ensure the reliability and validity of health monitoring data collected from hard-to-reach populations, emphasizing the importance of data quality in shaping evidence-based public health interventions.
6. Promote inclusivity. Emphasize the significance of inclusivity in survey design and implementation, aiming to create survey instruments that resonate with the diverse backgrounds of hard-to-reach populations.
7. Encourage interdisciplinary and intersectoral collaboration. Facilitate discussions and networking opportunities to encourage collaboration between researchers, healthcare providers, policymakers, and community representatives, fostering a multidisciplinary and intersectoral approach to addressing health disparities.
   
   

Programme

Chair: Hanna Tolonen, President EUPHA Public health monitoring and reporting section
Co-chair: Sofia Ribeiro, President EUPHA Public health policy and politics section

Registration

The registration fee is EUR 150. Networking lunch and refreshments are included.