How to involve ‘hard to reach’ population groups in research projects

Abstract Issue Addressing and reducing health inequalities is a major challenge in public health. Actively involving the most vulnerable populations groups in research projects in order to assess and address their needs is an important step towards reducing health inequalities. However, the most vulnerable groups are often perceived as the most difficult to reach for researchers. Description We conducted a research project to assess and address the health effects of the COVID-19 pandemic in vulnerable population groups. In three neighbourhoods, we identified the 2-3 most vulnerable population groups. We aimed to interview at least 20 participants per neighbourhood, evenly distributed among the groups, using creative and adaptive recruitment methods. Results Successful strategies differed per group. Strategies that proved successful were: rewriting information and consent letters together with the target population to help make them more accessible and attractive; using simple language in texts and while interviewing; asking the target population what type of compensation for the interview they would find most attractive; identifying persons who function as social hubs in the neighbourhood, asking them to help recruit participants, and providing them with financial compensation for their time; asking professionals in care and welfare organisations to help recruit among their clients; interviewing people in the places they would normally go to; snowball sampling. We met our recruitment goals. Lessons When working with ‘hard to reach’ populations, it takes researchers time, flexibility and creativity to find the right strategy to recruit participants while still respecting the boundaries set by GDPR and ethics committees. We recommend researchers to think about various possible recruitment strategies before starting a project, and to be prepared to change strategies during a project if necessary. Key messages • ‘Hard to reach’ populations are not really hard to reach, they just require a different mindset and skillset from the researcher. • We encourage researchers to be creative and flexible in finding the right recruitment strategies in their project, and to think about various possible strategies before starting a project.


Background:
Despite having a high healthcare need, persons with complex conditions are less likely to receive comprehensive care. Individuals with SCI experience difficulties accessing services 2-4 times more than the general population. There is little agreement concerning the factors that influence these access restrictions. Few studies focus on health system impact on characteristics on access.

Objective:
To outline barriers and facilitators to service access among persons with SCI across 22 countries in terms of health system characteristics Methods: InSCI(2017): 1st community survey on experience of persons with SCI, 12591 participants, 22 countries (Australia, Brazil, China, France, Germany, Greece, Indonesia, Italy, Japan, Lithuania, Malaysia, Morocco, the Netherlands, Norway, Poland, Romania, South Africa, South Korea, Spain, Switzerland, Thailand, USA). Data analysis: 1. Hierarchical cluster analysis based on Gower distance (to group systems by access restrictions: Acceptability, Approachability, Availability, Affordability, Appropriateness). 2. Generalized linear mixed-effects decision tree (to explore the association of system characteristics and access, including WHO and OECD system indicators (e.g. UHC index, expenditure, human resources). Missing values were imputed with missforest. Results: 12% of persons with SCI reported having an access restriction, most of them (7%) with Availability. By country, the highest unmet needs were reported in Poland (25%), Germany, Lithuania, and Romania (13). 1. Cluster analysis: 7 health systems clusters (groups) were identified. 2. By June 2022, we will have the results of the second analysis: the association of system characteristics with access and how it is modified by socio-demographic and medical factors.

Expected conclusions:
The study identifies factors a country could modify in order to improve access and strengthen the system for persons with SCI/disability, that might be relevant to general population as well.

Key messages:
Persons with SCI often experience similar access restrictions across countries, incl. those with high-performing health systems. System strengthening in this area is further required in all countries. Health systems are fragmented, e.g. healthcare quality and access inside a country differs by region, urban/rural setting etc., hence, the systems are challenging to classify.
Abstract citation ID: ckac129.476 How to involve 'hard to reach' population groups in research projects

Issue:
Addressing and reducing health inequalities is a major challenge in public health. Actively involving the most vulnerable populations groups in research projects in order to assess and address their needs is an important step towards reducing health inequalities. However, the most vulnerable groups are often perceived as the most difficult to reach for researchers.

Description:
We conducted a research project to assess and address the health effects of the COVID-19 pandemic in vulnerable population groups. In three neighbourhoods, we identified the 2-3 most vulnerable population groups. We aimed to interview at least 20 participants per neighbourhood, evenly distributed among the groups, using creative and adaptive recruitment methods.

Results:
Successful strategies differed per group. Strategies that proved successful were: rewriting information and consent letters together with the target population to help make them more accessible and attractive; using simple language in texts and while interviewing; asking the target population what type of compensation for the interview they would find most attractive; identifying persons who function as social hubs in the neighbourhood, asking them to help recruit participants, and providing them with financial compensation for their time; asking professionals in care and welfare organisations to help recruit among their clients; interviewing people in the places they would normally go to; snowball sampling. We met our recruitment goals.

Lessons:
When working with 'hard to reach' populations, it takes researchers time, flexibility and creativity to find the right strategy to recruit participants while still respecting the boundaries set by GDPR and ethics committees. We recommend researchers to think about various possible recruitment strategies before starting a project, and to be prepared to change strategies during a project if necessary. Key messages: 'Hard to reach' populations are not really hard to reach, they just require a different mindset and skillset from the researcher.
We encourage researchers to be creative and flexible in finding the right recruitment strategies in their project, and to think about various possible strategies before starting a project.