BHI Brain Health Pilot Study FAQs

The pilot is a comprehensive study of ways Lakewood Ranch residents function mentally, socially, cognitively, and overall, as well as the factors in people’s lives that present risk or promote resilience in brain health and performance.  The preliminary analysis of the pilot study will inform the longitudinal study.

A random sample of Lakewood Ranch adult residents will be identified from an independent organization.  Participants must be 18 years of age or older and be a permanent resident of Lakewood Ranch (resident 6 months and 1 day per year) and want to be part of the science that could improve brain health at the individual and community level in the near term and for future generations.

Researchers and clinicians from the Brain Health Initiative, Massachusetts General Hospital (MassGeneral), a Harvard Medical School teaching hospital.

If randomly selected, you will receive an invitation letter in the mail that will describe the study and provide instructions on how you can opt-in or opt-out of study participation.

Upon arriving on the study’s secure website, you will be asked to log in with your unique access code (included in the invitation letter).

You will be shown a brief video about why YOUR participation matters.

You will then be asked whether you are interested in participating in the Brain Health Initiative Pilot Study (opt-in or opt-out).

If you choose to opt-in to the study (thank you!), you will be directed to pages that include information about the study; your rights to privacy and confidentiality, and your permission to stop participating at any time.  Then, you will be asked to provide your consent.

After providing consent, you will be able to access the online BHI Pilot survey and cognitive games which will take up to 90 minutes to complete.

Some participants who complete the study will be randomly selected to participate in a virtual focus group (small group discussion) to inform us about “what worked” and what should be improved related to the study.

· Are you are 18 years of age or older?

· Is Lakewood Ranch your permanent place of residence?

· Do you want to be part of science that could improve brain health for future generations?

If you say yes to the above questions, you may be eligible to participate in this study!

Our current funding asks us to learn about how the Lakewood Ranch environment, lifestyle, and community affect people’s brain health and performance.  So, at this time, we will collect information from primary residents of Lakewood Ranch who experience living here at least 6 months and 1 day a year.

As a participant, you will contribute to a historic first step of a region-wide long-term study of brain health.  The data collected will help improve the understanding about brain health in general, which will provide a greater understanding about how to promote and protect brain health and fight brain illness at the individual and community level. 

You may feel particularly gratified about participating in research, as an opportunity to give back to the global research community, the greater Suncoast region, and to inform the selection of future brain health innovations. The pilot study will provide invaluable data to the community and to the Brain Health Initiative about community trends and needs related to brain health and brain illness.  Further, the data will be used to identify innovative brain health interventions and solutions that may increase brain health outcomes and support prevention, early detection, and performance optimization across the lifespan of our residents, workforce and visitors. 

Based, in part, on data analyzed from the  BH Pilot Study, innovative interventions will be selected, with community input,  from a global set of brain health solutions (like neurotechnology), that will be vetted and brought to the region for validation and feasibility studies through the developing Brain Health Innovation Lab. The first clinical trial, for example, a Harvard Medical School telehealth innovation to support a brain healthy lifestyle, is anticipated in late 2020.  

If you were not randomly selected to participate in the BHI Pilot Study, you will have a chance to participate in many other future Brain Health Initiative related studies.  In the future, we intend to expand the study to include residents from the greater Suncoast and to conduct studies with children and adolescents. Further, the BHI will be bringing innovative interventions to promote and protect brain health and fight brain illness that focus on brain health prevention, early detection, innovative intervention, and performance optimization across the lifespan. These validation and feasibility studies will be made available to residents, workforce, and visitors.

In our day to day lives, we are bombarded with 5-minute customer satisfaction surveys. But, could you imagine if 5-minutes was all it took to capture the many factors that affect your brain health?!  Several different measures are included in the BHI Pilot Survey to collect information about your brain health, including life experiences, daily routines, relationships, and mental and physical health.  The more information we can collect, the better able we will be to understand the multiple factors that contribute to brain health and performance.

The pilot survey is divided into six sections. Those who participate will be asked about their background, such as age, occupation and education history, and brain health protective and risk factors associated with relationships with others, life experiences, mental and physical health, lifestyle habits, and experiences with COVID-19. Participants will be directed to take three online cognitive games through Harvard’s website. The games will take about 10 minutes to complete (in total) and will be like completing a “brain game” or puzzle. The games will target certain aspects of brain performance, including memory and attention.

After completing the survey, you will automatically be directed to take three online cognitive games through the Harvard website. The games will take about 10 minutes to complete (in total) and will be like completing a “brain game” or puzzle.  The games will target certain aspects of memory and attention.

Some of the questions we ask relate to sensitive information, such as relationship quality, substance use, difficult life experiences, and depression. These questions have been used in previous studies and capture important aspects of what we are studying – brain health and brain illness.  Your answers will remain confidential and will be used solely for the purposes of this research.

Some participants who complete the survey will be randomly selected to participate in a virtual focus group (e.g., a small group discussion).  The goal of the focus groups is to inform us about “what worked” related to the study.  We will seek feedback on questions including, was the survey an appropriate length, were some questions easier to answer than others, how was your experience taking the online cognitive games, etc.?  This information will inform our future studies related to brain health.

Our findings from the BHI Pilot Study will inform future brain-related research for Lakewood Ranch residents, the greater Suncoast community, and beyond.  This study will also provide information for the second phase of the Brain Health Initiative, the Brain Health Innovation Lab.  Participants or specific neighborhoods within the Suncoast community will be invited to partake in studies testing innovative  interventions that promote brain health or prevent brain diseases.  

If you have additional questions regarding the BHI Pilot Study, or want to confirm whether you were randomly selected to participate, please email us at brainhealthstudy@mgh.harvard.edu.  If you have queries related to speaking engagements and Dr. Stephanie Peabody, please contact Kim Miele (kmiele@brainhealthinitiative.org).