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Slide1
WHF Poster 2020
Developing My Bleeding Disorders Community (
MyBDC
): A community-powered registry to provide a 360-view of living with a bleeding disorder
Log In:
https://summit2020-wfh.ipostersessions.com/Default.aspx?s=login
Email:
mwitkop@hemophilia.org
Password: MUg9E57c
Poster ID: 317
Slide2Layout Choices
Slide3#1 Content Box: Introduction
Introduction and Objective:
Knowing the importance of including the consumers voice in the future of research, the National Hemophilia Foundation (NHF) partnered with the software healthcare analytics company;
ArborMetrix
, to develop a cloud-based platform; NHF’s Community Voices in Research (CVR), formerly known as
MyBDC
.
Through CVR, NHF will be able to send out longitudinal surveys and follow participants for a minimum of 5 years.
Image: Table: What it is vs. what it is not
Slide4What is it?
A community-powered registry providing a 360 degree view of living with a bleeding disorder from those affected and their unaffected family members
Gathers the consumer’s perspectives complementing research efforts in the community
Tool to encourage participants to become active partners in their healthcare
Helps identify the community’s research, educational and advocacy priorities
.
Slide5What it’s NOT
MyBDC is
NOT
:
Research
HTCs and ATHN drive research
NHF’s goal is to add
the patient’s perspective
Designed to compete with already established research initiatives in the communitySecretHTCs and researchers will have access to insights to further
their
projects
Rely on HTCs to recruit or enroll participantsNHF welcomes your support and assistance disseminating information
Slide6#2-3 Content Box: Timeline for CVR
4/2017
MASAC guidance to hear more of the patient’s voice
10/2017
Strategic plan development for NHFs Research Department
Goal: Improving the Lives of People with Bleeding Disorders by Closing the Informational Gap through the Generation of Knowledge and Evidence
Objective 1: Advance the Care, Treatment and Support of Advocacy for Persons with Bleeding Disorders through Transformational Research
Objective 2: Support the Attraction and Retention of a Highly-Engaged Provider Workforce to Sustain the Interdisciplinary Model of Care
Objective 3: Enhance the Impact of Research through Effective Communication with Internal and External Audiences
Objective 4: Develop and Operationalize a Patient-Driven Registry to Complement and Integrate with Existing Databases, thus Increasing the Impact of Research on Inheritable Bleeding Disorders
Slide7#2-3 Content Box: Timeline for CVR
1/2018
First visit with Center for Disease Control and Prevention (CDC)
2/2018
Staff Integration with Strategic Plan
4/2018
Call for RFPs and Interviews
6/2018
Charter Stakeholder Meeting
6-10/2018
Focus Group Meetings in conjunction with Inhibitor Summits/BDC (consumer/provider)
10/2018
Contracted with
ArborMetrix
to host the platform
1/2019
First meeting with
ArborMetrix
/NHF staff- weekly meetings there after
1-4/2019
Development of skeleton of
MyBDC
with NHF/
ArborMetrix
staff and HTC provider representative
2/2019
Stakeholder Update via webinar
3/2019
Exempted by Quorum Internal Review Board (IRB) (now Advarra)
4/2019
First enrollment at NHF’s Washington Days – Enrollment continues throughout
4-12/2019
Multiple NHF Chapter in-person events/presentations
4-7/2019
Developed Baseline survey and marketing tools
Slide8#2-3 Content Box: Timeline for CVR
5/2019
2nd meeting with CDC to review Baseline survey – Multiple informational Chapter webinars offered
6/2019
First of multiple Virtual Advisory Panels
6-8/2019
Teen track focus groups
8/2019
Baseline survey released for affected individuals
9/2019
Hot Topic Survey on vaping released
10/2019
Personalized Dashboard (PD) released at Anaheim BDC along with embedded educational resources
11/2019
Incorporated
Guias
and NYLI to assist with minority and young population recruitment
1-3/2020
Developed Family Baseline Survey, Pain Survey- # of resources and reports available on PD increased
3-6/2020
Pandemic strikes the USA
4/2020
Family Baseline released, Pain Survey released, COVID Hot Topics developed and released. Applied for NIH Certificate of Confidence (CofC)
5/2020
Name changed to NHF’s Community Voices in Research (CVR) – CofC approved
6/2020
Enrollment statistics _________________________________________
Slide9#4 Content Box: Materials and Methods
Materials and Methods:
Exempted by a centralized IRB, surveys are sent to voluntarily enrolled participants via email and are completed utilizing smartphones, tablets, or computers. Types of surveys include: enrollment, baseline, annual, sub-surveys of interest, and hot topics. Participants may opt-in/out of any survey. Identified through chapter and NHF meetings or social media, eligible persons include anyone with an inherited bleeding disorder and their immediate unaffected family members. All results are reported out in a de-identified, aggregated manner. Each participant will have a personalized dashboard that allows them to see the results and benchmark themselves against all participants and have access to resources and education.
Images: screen shots of dashboard – link to video tour of dashboard with audio
Slide10#5 Content Box: Patient Perspective
CORE Survey
(yearly)
Sub Surveys
Hot Topics
Question of the Day/Month
Slide11Links: Domains covered by Enrollment Survey
Affected
Not Affected
Enrollment
Age
Birth Sex
Gender Identify
Sexual Orientation
Ethnicity
Race
Primary/Secondary Bleeding Disorders
Severity
Type
Relationship to family member with a bleeding disorder
Primary/Secondary Language
Birth Country
Country you live in now
Same
Slide12Link: Domains covered by Baseline Survey
Affected
Not Affected -
Answered specifically thinking about
the unaffected person
Baseline
Demographics
Family Associations
Diagnosis History
Hx Bleeding Symptoms
Co-Morbidities
Inhibitor Status
Treatment Regimen
Gene Therapy
Bleeding History
Joint
Life threatening
Reproductive
Sexual Activity Limitations
Provider Information
HTC vs non-HTC
NHF and other organizations participation
Pain
Intensity
Experience
Impact
Pain Treatment
Prescription
Non-prescription
Medical Marijuana Use
Mental Health
Passing of Others
Physical Activity
Camp Experience
Demographics
Family Associations
Co-Morbidities
Reproductive
Sexual Activity Limitations
Smoking Status
Medical Procedures
Hepatitis Status
Menstrual Cycle
Chapter Activity
Pain
Intensity
Experience
Impact
Pain Treatment
Prescription
Non-prescription
Medical Marijuana Use
Mental Health
Passing of Others
Social Support
Physical Activity
Dental History
Not Affected - Answered thinking about the affected loved one/family member
Diagnosis History
Hx Bleeding Symptoms
Inhibitor Status
Hospital visits
NHF/other organizations participation
Gene Therapy
Joint & Life Threatening
Bleeds Hx
Camp Experience
Slide13#5 Content Box: Results
Results:
Enrollment began in late March 2019.
By June 2020, 593
persons were enrolled (
60% affected, 40% unaffected family members
).
The baseline survey was sent out to both those affected with an inherited bleeding disorder (8/2019) and their family members (3/2020). As of June, 2020, 37% of affected persons have completed this survey and 19% of family members.
40% have completed a pain survey that was sent out to 115 affected persons who identified as having chronic pain in their baseline survey.35% completed a COVID survey sent out to everyone enrolled in CVR.Use slide show option to present survey data (next 8 slides)
Slide14593
Total Enrollment
Launched 3/2019
366
Females
221
Males
Enrollment
6
Other
6/1/
2020
Gender Identity
Slide15Demographics and Self-Identified Race and Ethnicity
35
60%
(n=355)
Have a bleeding disorder
35
40%
(n=238)
Is a family member
6
/1/2020
Slide1635
41%
Completion Rate
Invitations
Sent 326
Baseline Survey for Affected Individuals
133
Total Affected Baseline Surveys Completed Since 10/2019
65
i
n
p
rogress
198
total
61%
6
/1/2020
Slide17Self-Reported Bleeding Diagnoses
(N)
6
/1/2020
Slide18Most Frequently Reported Co-Morbidities
6
/1/2020
Slide19Care as Identified by the Participant
N = 141
Includes partial responses
6/1/2020
Slide20What we’ve learned so far…
44% of women experience pain most days or everyday
That number jumps to 66% when we look at men
44%
66%
Overall 47% of participants reports having difficulty maintaining employment because of their bleeding disorder
18% of participants are using medical marijuana for symptom management
40
% of all women respondents vs
50
% of all men respondents
N = 131
6
/1/2020
Slide21Women with bleeding disorders (N=64) reported a history of:
Family history of a bleeding disorder at time of diagnosis
N = 131
What we’ve learned so far…
6
/1/2020
Slide22#6 Content Box: Conclusions
Conclusions:
There is great initial interest in CVR, a community-powered registry, designed to promote the community’s voice in research. The de-identified, aggregated results will be available to researchers promoting a better understanding of what it is like to live with an inherited bleeding disorder. The personalized dashboard was launched in November 2019.
Image: participants’ quotes on next slide
Slide23As both a person with a bleeding disorder and as a researcher, I am extremely curious and excited by what is possible with MyBDC!
It is immediately clear to me the value it will bring to not only those who study, but to those who are studied (a rare dual feat!).
A huge opportunity exists to push our understanding and to leverage those insights into substantive advancements for the bleeding disorder community.
Participant’s Quotes