Direct from the Source: Learning about research study participation from men

Certain populations may be more challenging to recruit as part of long-term health research studies. For example, it has historically been more difficult to recruit and retain men in research.¹ It is the responsibility of researchers to develop strategies that specifically focus on engaging understudied populations in health research.  

Of those invited to join the study so far, about 66% of Connect participants are female, while about 33% are male.  

Moving forward, Connect aims to better engage men as well as people from a wider range of communities, backgrounds, and life experiences. When different people take part in research, findings are more likely to reflect the health needs of their communities.  

When considering how best to boost research engagement, it’s important to understand what motivates people to take part in research studies, and what might cause hesitation. This allows us to better tailor outreach strategies and improve the participant experience. We can also address concerns directly in recruitment invitations and throughout study participation. 

The teams conducting research to understand how to better engage people, and men in particular, in studies like Connect spanned the nation. While they conducted their work with different populations, there were key similarities in their findings. Across the interviews, a few themes stood out: trust, personal connection to cancer, convenience, and clear communication about why participation matters. 

These findings are early steps toward improving the Connect participant experience. They will guide future research into motivations for joining and staying in a study, as well as what makes it easier or harder to participate in studies like Connect. 

Research from Kaiser Permanente Georgia (KPGA)

Goal: Understand what makes research participation easier or harder for men at KPGA.

Approach: The team interviewed 19 men ages 30 to 70 who were KPGA members, including 11 already in Connect and nine who were eligible but were undecided about the study and had not yet joined. 

Findings: Men weighed many factors in the process of considering whether to join Connect, including convenience, research ethics, and how biological samples like blood would be used. Many said they were motivated by loved ones affected by cancer and saw their participation as a way to help others in the future. 

Key lessons for researchers: 

Next steps: The team is continuing to review the interview data and has already spent many hours reviewing interview transcripts. The team will share the full findings through publications and presentations and will apply learnings to Connect recruitment and engagement activities. 

Research from Kaiser Permanente Northwest Center for Health Research (KPNW)

Goal: Learn more about men's participation in research studies like Connect. 

Approach: The team interviewed 35 male KPNW members, including both current Connect participants and those undecided about the study who had not yet joined. 

Findings: Trust, transparency, and scientific integrity were central to men's decisions about joining. Participants wanted to quickly understand what participation would involve and why they were specifically asked to take part.  

Many were motivated by a loved one’s history of cancer and a sense of civic responsibility, and non-White participants in particular noted the value of being represented in research.  

Common barriers included men's general tendency to be less engaged in health care, and a reluctance to confront health concerns that participation might surface. Growing uncertainty about data privacy and misinformation has also made trust harder to earn. 

Next steps: The team is incorporating these findings into Connect’s recruitment strategies and publishing the results so other researchers can benefit from their findings. The article outlining these findings will be available for free in an upcoming edition of The Permanente Journal. 

Research from Baylor Scott & White Health (BSWH)

Goal: Understand what makes participation easier or harder for various populations, including Spanish-speaking communities, and explore preferences around joining studies like Connect. 

Approach: The team interviewed 15 BSWH patients (including 14 current Connect participants, including four men) about how they learn about research, what makes participation harder, how researchers should communicate, and what role incentives play in encouraging someone to join and stay involved in a study. 

Findings: Most participants were drawn to research through a personal or family connection to cancer and other chronic diseases, with the hope of helping future generations. Warm, personal engagement with research staff was an important factor in their decision to stay involved. 

Next steps: The team has delivered the following recommendations based on their findings: