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Jul 19 2016

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Five Ways to Help Study Participants Feel Like Research Heroes

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By Chris Gantz, MBA, program manager, Clinical Research Support Office, Recruit Enhancement Core

A great deal of outreach and engagement needs to occur if we are to truly change how the public views research. In a recent blog post, I pointed out some of the reasons why people choose not to get involved in clinical research studies. I am always looking for practical ways to address these issues and often find creative ideas right around the corner. Here are some valuable insights that I’ve gathered from our clinical trial coordinators and study participants at The Children’s Hospital of Philadelphia about how researchers can reduce, and in some cases eliminate, barriers to recruitment and retention:

Barrier 1: Research participants don’t feel like their efforts make a difference.

Many research teams don’t have a mechanism in place to convey study results to their past participants. It’s easy to understand the effect this lack of communication has on individuals who agree to volunteer their time and energy as a participant but never know the results of the project. Building in a communication plan using readily available tools such as email blasts and newsletters can be a fantastic way to stay in touch and should be considered a standard practice for all research studies.

Barrier 2: Research participants don’t feel welcomed.

A common complaint from participants is that they have trouble finding the location of their study visit and encounter staff who are unable to direct them. This is a problem faced by most, if not all, large research institutions. With multiple studies being conducted across a number of different locations, people are bound to encounter challenges getting to their appointments. I have met a number of research coordinators who have come up with novel solutions to these challenges.

Some have sent reminder letters/emails with a photograph of the building and the meeting location, included their cell phone numbers. Others have taken the time to walk across the campus to meet a participant who arrived at the wrong location. In addition to those strategies, we should ensure that we are giving non-study staff such as security guards and information desk attendants the tools and information they need to help direct participants.

Barrier 3: Potential research participants lack a background in volunteering.

Many of the people who are contacted about participating in a study will not have had previous experience with how research projects are conducted. Teams need to ensure that their recruitment materials and outreach activities take this into account and make an effort to clearly define what is being asked of the potential participant.

Additionally, 85 to 90 percent of people who do participate in a clinical trial indicate that they would be willing to do so again if they were asked. Participant registries, if used correctly, can be a great resource for engaging with people who have expressed a continued desire to help move research forward. These registries should not just be used to repeatedly ask individuals to participate in research but should also provide information and resources that people will find useful and keep them engaged.

Barrier 4: The volunteer tasks are too routine.

Most people lead incredibly busy lives and have many demands on their time. Teams often run into challenges with enrollment and retention when the study tasks are seen as being boring or requiring too large of a time commitment. During feasibility planning discussions, study teams should address these realities, and if possible, offer inventive solutions. Some teams have held weekend appointments, conducted visits offsite, converted paper questionnaires into forms that can be completed online, and provided packaging so that study equipment can be returned by mail rather than having the participant return to the site.

Barrier 5: Study participants’ efforts aren’t recognized.

It is an undeniable fact that without the generosity and dedication of members of the public who take the time to be a part of research study many trials will not succeed. This message needs to be communicated broadly and over and over again. Some organizations have begun referring to their participants as medical or research heroes. I believe these terms capture the importance of their participation perfectly, and I hope they are more widely adopted.

If you are the member of a research team who has worked to address some of the issues I mentioned above, I am eager to hear how your group worked to overcome similar challenges and improved recruitment. Conversely, if you have ever participated in a research study and would be willing to share what went well and what could have been improved, I hope you will consider sharing your experience. Contact me at gantz@email.chop.edu.

Permanent link to this article: http://blog.research.chop.edu/five-ways-help-study-participants-feel-like-research-heroes/