During a research study or clinical trial, it is quite common to send your participants to specific sites in order for them to contribute to your trial. With this being so, a certain burden is placed on the participant. They are then responsible for transportation, navigating the premises, parking, additional fees if they need to use public transport or a ride service, and coordinating their schedule to fit the requirements of the study. Alongside all of these factors the participant must face, they are expected – for the most part – to face these alone. This is due to a lack of communication between the researcher and participant, which is sadly not an uncommon additional burden to the participant.
As decentralized studies are making their way into the world of research, these burdens are beginning to be looked at intently. We are starting to see new ways in which we can relieve the participant of these extra stressors. It is known that participant retention and engagement are crucial determinants of the success or failure of a study. This fact alone drives the research community to put their participants first and remove these burdens.
Solving site burden starts with proper planning of a study. Following a proper plan, the need for a smooth execution is the next step to reduce site burden for the participants. Listed below are the top strategies for reducing site burden.
- Communication: If it is required for a participant to arrive at a site in-person, clear communication is a must. Participants should be kept in the loop regarding the exact whereabouts of the site. Clear directions should be drafted prior to the study so they can be given at ease when need be. If a participant is unable to travel to a given site, conversations should be had to accommodate this barrier.
- Transparency: When certain details are kept unclear from the participant, it is expected to see a lack of retention and engagement from the participant. Transparency between the researcher and participant can ensure that both parties are stress free and comfortable with data collection and testing. For some participants, the unknown itself is scary. Maybe they have never been to a site before, or have never had their blood taken. A clear and open conversation of exactly what will occur during the time spent at the site can help avoid any unnecessary burden of stress on the participant. While at the same time, promoting successful recruitment and retention of participants.
- Utilize technology: Taking the decentralized approach always helps remove site burden for the participant. Creating electronic forms for questionnaires and consent can help avoid unnecessary travel for the participant. Researchers can also consider telehealth approaches if a conversation between them and the participant is required. This one strategie helps remove numerous amounts of burdens off the participant.
- Traveling nurses: For clinical studies, biospecimen collections and quantitative data may be necessary. A way to receive this data while removing site burden is to recruit traveling nurses for your study. With this, researchers can have nurses go to their participants' homes or meet at a facility closer to their homes to collect necessary data.
- Compensation for transportation: If decentralization is not an option for your study and participants are required to travel to sites, it is important to consider the cost of their travel. By compensating participants for their travel costs, researchers can take the burden of additional expenses off their participants shoulders. An additional bonus to this strategy is that it helps create a better relationship between the participants and researchers; A sense of care and consideration is created.
- Flexible hours of participation: It is important to consider the hours your participants have available when asking them to come into sites. Most participants will be working a 9-5 job, meaning they will likely have to leave work to participate in your study. To help reduce the burden of having to take time off of work, it is suggested that researchers collaborate with their participants to find times best suited for them. An easy way to do this is by using an online service that allows participants to mark their availability on a calendar, so then the researcher can work on finding a time that works for both parties.