Experiences with Research

The All of Us Research Program is a historic effort to collect and study data from one million or more people living in the United States. The goal of the program is better health for all of us.

The National Hispanic Council on Aging’s (NHCOA) role in the All of Us Research program is to raise awareness about health research and the program itself. This survey aims to collect personal experiences from people who engage in research, and to learn about how people see research benefitting their community/communities, as well as trying to understand how we can overcome barriers to participation in health research.

Participants can be medical providers, health care providers, researchers, academics, community leaders, research participants, and other people that work in the medical, science or health fields. 

We are interested in your personal and/or work experiences with research. Your answers are voluntary, you can skip any question or discontinue the survey at any time. Your answers will be kept strictly confidential and will not be associated with your name. The survey takes approximately 20 minutes to complete. The data collected from this survey will be used to help build communication assets for the All of Us Research program for the specific target markets of New York, Texas, Chicago, Miami, and Detroit.

For your participation, you will receive a limited art print from an artist in your community that depicts diversity in your community. 

HOW WILL MY INFORMATION BE KEPT CONFIDENTIAL?

We will take measures to protect the security of all your personal information, but we can never fully guarantee the confidentiality of all the information we collect. Measures we will take include:

The survey is collected through Survey Monkey. Survey Monkey utilizes SSL encryption, which will be turned on to encrypt the survey and survey results.

Upon closure of the survey, your data will be transferred onto secured and encrypted servers managed by the National Hispanic Council on Aging and deleted from the SurveyMonkey platform.

We will maintain confidentiality standards by coding each participant enrolled in each survey through the assignment of a unique identification number. We collect email addresses for the sole purpose of contacting you to send you the limited edition art print as a thank you for your participation.

Survey-related records identifying you will be kept confidential and, to the extent permitted by applicable laws and/or regulations will not be made publicly available except to the individuals and entities listed in the paragraph below.

Should we use any quotes, all participants’ identities will remain confidential.

If you do not wish to participate in this survey, please do not continue. If you have any questions about your participation in this survey, please email nhcoa@nhcoa.org and in the subject line state: AoU Survey

Survey Sponsors: 
The National Hispanic Council on Aging (NHCOA), is a national organization that works to improve the lives of Hispanic older adults, their families, and caregivers.

The Diverse Elders Coalition advocates for policies and programs that improve aging in our communities as racially and ethnically diverse people; American Indians and Alaska Natives; and lesbian, gay, bisexual and/or transgender people.
1.What is your name?
2.What is your email address? This will only be used in case we need to follow up on a question and to contact you about receiving a limited edition print from an artist in your community).
3.What is your profession?
4.How many years have you been in your current position?
5.What is your race or ethnicity?
6.What city and state do you currently live in?
7.Have you ever personally participated in health research?
8.Have you heard about the NIH All of Us Research Program?
9.If you have personally participated in health research, please tell us what kind of research you participated in, what your experience was, and what motivated your decision to do so.
10.If you have not personally participated in health research, why not? What would motivate you to personally participate in health research?
11.In general, what are the benefits of participating in health research? What specific benefits can you identify for your community/communities?
12.What are some of the barriers that your community/communities face when it comes to participating in health research?
13.How can researchers engage diverse communities in research? Are there any suggestions specific to your community/communities?
14.What are community organizations/academic institutions/programs in your area (or nationally) doing to overcome these barriers and enroll more diverse populations in health research?
15.What are the implications of lower health research participation rates among diverse communities? How does that change when facing a global health crisis like COVID-19?
16.How can health research change for the better in the next 10, 20, or 50 years?