Diversifying Electronic Cohort Research at UCSF

A community-engaged contest to select and support a diverse "eCohort" at UCSF

Racial/ethnic minorities are underrepresented as participants across the entire research spectrum, and available data indicate that this is also the case at UCSF and in online-enabled research projects. To help address this equity issue, the Chancellor’s office is supporting a community-engaged effort to help UCSF researchers involve diverse research participants in their studies.  We are focusing on “eCohort” studies that use online tools such as the Health eHeart Study (a UCSF research study focused on heart health that has recruited over 180,000 participants, and is 100% online) to directly engage participants.   We are now looking for eCohort proposals from research teams that seek to understand and improve the health needs of diverse communities.

Proposals must be "shovel-ready" cohort studies in need of an online engagement platform (for electronic consent, online surveys, smartphone-based messaging, wearable device integration, and for gathering electronic health record data from UCSF).  Selection will also consider whether the research will address issues that resonate with our community partners (African American, Chicano, Latino, Indigena and Chinese community organizations) and will use an approach that is culturally and linguistically appropriate.

We plan to select 1-2 proposals to receive a customized web portal for online engagement (using the Eureka Research Platform), as well as one year of in-kind support for project management, platform customizations, community engagement, and recruitment.

  • June 20 - July 31: Submit Draft Proposals
    • Develop and submit a 2-page preliminary proposal 
    • Subscribe to email updates to view new proposals and comments
    • Express interest in joining a team if you see proposals you want to join
  • Aug 1 - August 31: Improve Proposals - Comment Period Now Closed
    • UCSF and community partners are invited to comment and ask questions.
    • Browse proposals and comment to improve others' proposals
    • Review comments on your own proposal, answer questions and revise if necessary
  • Sept 1 - Final Proposals Due
    • Address all questions, as needed
    • Revise and submit final proposals if needed
  • Sept 4-7: Review and Scoring of Final Proposals and Submitted Comments
    • Selection committee, comprised of community partners and UCSF research leadership, reviews and chooses winning proposals
    • Awards Announced no later than Sept 17

Proposals (8 total)

Displaying 1 - 8

The Patient Cancer OUtreach, Navigation, Technology and Support (Patient COUNTS) Project: Addressing Care for Asian Americans with Cancer

Proposal Status: 

Cancer is the most common cause of death for Asian Americans, but many Asian American cancer patients do not receive appropriate treatment or survivorship care. To better address their needs, we will develop and test a culturally and linguistically tailored navigation program, Patients COUNTS. We will enroll 150 Asian American men and women recently diagnosed with colorectal, liver, or lung cancer. We will work with an Advisory Council comprised of members from the community and healthcare settings to ensure our platform is culturally relevant. Bilingual patient navigators will help patients: obtain appropriate clinical care, assist with logistical needs (e.g., transportation), and provide other support to address emotional, social, and stress-related needs. Patient COUNTS will use a multilingual (English, Chinese, Vietnamese) web-based patient portal to provide access to virtual or in-person patient navigation, cancer information and resources, and to assess patient-reported outcomes.

Improving access to chronic urticaria care by creating an online engagement platform accessible to diverse patient populations

Primary Author: Iris Otani
Proposal Status: 

Objective:

To evaluate whether an online engagement platform for chronic hives / urticaria (CU) accessible to diverse patient populations and focused on symptom tracking, assessment of psychiatric comorbidities, and clinician feedback improves immediate and long-term CU symptom control.

Background and Problem

Pilot Test & Feasibility of a Digital Lifestyle Cohort of Diverse Individuals with Cancer

Proposal Status: 

PLAIN LANGUAGE SUMMARY - A common question that people ask after they find out they have cancer is: “What can I do to keep the cancer from spreading or coming back?” Our study aims to find answers for the millions of people worldwide who live with cancer.

Asian Pacific Islander And Cardiovascular Disease Outcomes: A Prospective Study (PANDA Study)

Primary Author: Priscilla Hsue
Proposal Status: 

While observational studies report that Asian Americans have different cardiovascular risks than other ethnic groups, less is known about the causes of these differences or their variation between each Asian subgroup. Our team at San Francisco General Hospital hopes to use Eureka Mobile Health as a key tool to investigate the underlying causes of heart disease among Chinese- and Filipino-Americans. We will act upon this information by developing culturally tailored interventions to improve Asian American cardiovascular health outcomes with a special focus on integrating mobile health devices into our study.

The Talking About Prostate Cancer (TAP) Study

Proposal Status: 

Prostate cancer is the most common cancer in men among all major racial/ethnic groups. Approximately 1 in 3 of prostate cancer diagnoses are classified as “low risk” and “very low risk”. Closely monitoring patients, also known as active surveillance, is a recommended option for men with very low risk and low risk cancer. However, only 40% of eligible men receive active surveillance.

The Talking About Prostate (TAP) cancer study will investigate:

1) Clinician perspectives on racial/ethnic differences in patients’ preferences about active surveillance.

2) Patient perspectives and ethnic/cultural/psychosocial beliefs about active surveillance.

3) The influence of patient, family, social networks, etc., on use of active surveillance.

4) Outcomes such as quality of life and well-being after prostate cancer diagnosis.

 

 This study will help better understand factors that contribute to active surveillance.

Computerized Assessment of Mental Status (CAMS): Using remote assessment to make mental health resources more accessible to underserved populations

Primary Author: Josh Woolley
Proposal Status: 

Computerized Assessment of Mental Status (CAMS): Using remote assessment to make mental health resources more accessible to underserved populations

The Problem

Hypospadias and Penile Problems in Children Including Observation Registry

Proposal Status: 

Plain-language summary of proposal:

Hypospadias is a condition that occurs in boys where the urethral meatus, or opening where the urine comes out, is not in the typical position.  The current consensus among pediatric surgeons it to repair the hypospadias surgically within the first year of life so that the boy will be able to live his life with a “normal” penis.  Thus, hypospadias surgery is now one of the most common genital surgeries performed in children under 18 months of age.  Recently, however, doubt has been cast on the validity of this consensus view.  First, the complication rate of these surgeries is high, second, the risk of anesthesia is higher in these young children, and third, there are ethical questions regarding informed consent; i.e., the ability of a minor to consent to genital surgery for a non-life-threatening condition.

So, the question becomes:  Is living life with the penile meatus not in the typical position detrimental to a child’s and/or adult’s quality of life?  If it is not detrimental, then the obvious answer is that we should wait; surgery can be done when the child is older.  However, it is also important to ask this question among a diverse group of people, as different ethnicities and cultural backgrounds will most likely affect how this question is answered.  Certain groups of people may do better with early surgery, and others with surgery later in life.  This has never been studied before.    

Our hypothesis is that most hypospadias surgery is unnecessary in infants and small children, but the results will vary by ethnicity and cultural background.  One of the ways we will study this hypothesis is by seeking out adults with hypospadias who have never had surgery, and see how they fared in life.  Since almost all children in the past have had surgery for their hypospadias, the numbers of “non-surgically altered” hypospadias patients are quite small, so we will need to study a very large group of adult men to find these patients. The only way to recruit enough adult patients from diverse groups (to include people with different ethnicities, sexual preferences, gender identities) would be online, through electronic medical records, and with community involvement.      

We will create the first registry for hypospadias in the nation, and this will be the first time watchful waiting (non-operative treatment) of genital atypia will be evaluated scientifically, and the first time a large diverse group of adult non-operated patients can be studied.