MyBDC: Empowering Bleeding Disorder Community
Creating a community-powered registry, MyBDC provides a comprehensive view of living with a bleeding disorder by incorporating consumer perspectives. It encourages active participation in healthcare and helps identify research, education, and advocacy priorities while respecting existing initiatives in the community.
Download Presentation
Please find below an Image/Link to download the presentation.
The content on the website is provided AS IS for your information and personal use only. It may not be sold, licensed, or shared on other websites without obtaining consent from the author.If you encounter any issues during the download, it is possible that the publisher has removed the file from their server.
You are allowed to download the files provided on this website for personal or commercial use, subject to the condition that they are used lawfully. All files are the property of their respective owners.
The content on the website is provided AS IS for your information and personal use only. It may not be sold, licensed, or shared on other websites without obtaining consent from the author.
E N D
Presentation Transcript
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
#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
What is it? What is it? A community A community- -powered registry providing a 360 degree view powered registry providing a 360 degree view of living with a bleeding disorder from those affected and of living with a bleeding disorder from those affected and their unaffected family members their unaffected family members Gathers the consumer s perspectives Gathers the consumer s perspectives complementing research efforts in the community complementing research efforts in the community Tool to encourage participants to become Tool to encourage participants to become active partners in their healthcare active partners in their healthcare Helps identify the community s research, Helps identify the community s research, educational and advocacy priorities educational and advocacy priorities . .
What its NOT What it s NOT MyBDC is MyBDC is NOT: : Research Research HTCs and ATHN drive research HTCs and ATHN drive research NHF s goal is to add NHF s goal is to add the patient s perspective Designed to compete with already established research initiatives in the Designed to compete with already established research initiatives in the community community Secret Secret HTCs and researchers will have access to insights to further HTCs and researchers will have access to insights to further their Rely on HTCs to recruit or enroll participants Rely on HTCs to recruit or enroll participants NHF welcomes your support and assistance disseminating information NHF welcomes your support and assistance disseminating information the patient s perspective theirprojects projects
#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
#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
#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 _________________________________________
#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
#5 Content Box: Patient Perspective Eligible to access PDD Baseline Survey Completed (once) Enrollment Link to domains covered by enrollment survey Link to domains covered by baseline survey Eligible for VAP CORE Survey (yearly) Hot Topics Sub Surveys Question of the Day/Month
Links: Domains covered by Enrollment Survey Affected Not Affected 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 Enrollment
Link: Domains covered by Baseline Survey Affected Not Affected - Answered specifically thinking about the unaffected person 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 Baseline Not Affected - Answered thinking about the affected loved
#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)
Enrollment Enrollment Gender Identity Gender Identity 581 583 593 590 552 366 Females 540 505 488 490 455 423 440 390 593 Total Enrollment Launched 3/2019 340 221 Males 290 240 190 141 140 6 Other 6/1/2020
Demographics and Self Demographics and Self- -Identified Race and Ethnicity Identified Race and Ethnicity Race Race select all that apply select all that apply 60% Middle Eastern 3 35 (n=355 ) Hispanic/Latino Hispanic/Latino Native Hawaiian/Other 4 24 South Asian 6 142 American Indian/Alaska 20 Have a bleeding disorder Have a bleeding disorder Asian 33 Black/African American 41 427 White/Caucasian 445 Yes No Prefer not to answer 40% I prefer not to answer 49 35 (n=23 8) Unknown 19 0 100 200 300 400 500 Is a family member Is a family member 6/1/2020
Baseline Survey for Affected Individuals Baseline Survey for Affected Individuals 200 133 Total Affected Baseline Surveys Complet ed Since 10/2019 180 160 41% Completi 140 133 35 on Rate 130 120 122 100 117 70 80 99 80 78 60 65 in 40 63 65 56 56 49 20 38 38 35 Invitations Invitations Sent 326 Sent 326 progress 0 Oct 2019 Nov 2019 Dec 2019 Jan 2020 Feb 2020 Mar 2020 Apr 2020 May 2020 198 total 61% 6/1/2020
Self Self- -Reported Bleeding Diagnoses Reported Bleeding Diagnoses (N) (N) Primary Bleeding Diagnosis Primary Bleeding Diagnosis (N = 131) (N = 131) Secondary Bleeding Diagnosis Secondary Bleeding Diagnosis (N = 14) (N = 14) Ehler-Danlos Syndrome (7%) 1 Factor X deficiency (2%) 2 Factor I deficiency (7%) 1 Factor XIII deficiency (2%) 2 Factor V Deficiency (7%) 1 Factor VII deficiency (2%) 3 Platelet Disorder (2%) Hemophilia B (14%) 3 2 Other (3%) 4 Other (14%) 2 Hemophilia B (9%) 12 Von Willebrand Disease (21%) 3 Von Willebrand Disease (23%) 30 Platelet Disorder (29%) 4 Hemophilia A (57%) 75 0 20 40 60 80 0 5 10 15 20 6/1/2020
Most Frequently Reported Co Most Frequently Reported Co- -Morbidities Morbidities Chronic Pain 40% Depression 29% Women (N=90) Hemarthropathy 27% Migraine 23% Hypermenorrhagia 67% Hypertension 23% Anxiety 22% Osteoarthritis 22% Dymennorrhagia 46% Hepatitis C 21% Asthma 19% PMS 26% Head Injury 13% Blood in Urine 13% 0% 20% 40% 60% 80% Eczema-Psoriasis 13% Hypercholesterolemia 13% Women (N=90) Thyroid Disease 12% Ulcers 12% Kidney Stones 11% IBS 11% ADD-ADHD 11% 0% 5% 10% 15% 20% 25% 30% 35% 40% 45% Most Frequently Observed (n=198) 6/1/2020
Care as Identified by the Participant Care as Identified by the Participant N = 141 N = 141 Includes partial responses HTC vs. no HTC vs. no- -HTC HTC Yes (N=86) N (N=48) Other (N=7) 6/1/2020
What weve learned so far What we ve learned so far N = 131 N = 131 18% of participants are using 18% of participants are using medical marijuana for symptom medical marijuana for symptom management management 44% of women experience pain 44% of women experience pain most days or everyday most days or everyday Overall 47% of participants reports having Overall 47% of participants reports having difficulty maintaining employment difficulty maintaining employment because of their bleeding disorder because of their bleeding disorder 44% 44% Pain 96% 40% 40% Women Depression 43% That number jumps to 66% That number jumps to 66% when we look at men when we look at men 50% 50% Anxiety 65% Men 0% 20% 40% 60% 80% 100% 66% 66% 0% 20% 40% 60% Yes No 40 40% of all women respondents % of all women respondents vs vs 50 50% of all men respondents % of all men respondents 6/1/2020
What weve learned so far What we ve learned so far N = 131 N = 131 Social Support (N) Social Support (N) Family history of a bleeding disorder Family history of a bleeding disorder at time of diagnosis at time of diagnosis Women with bleeding disorders Women with bleeding disorders (N=64) reported a history of: (N=64) reported a history of: Get invited to do things with others Have people who care what happens to me 7% 7% Bleeding before or after childbirth 73% Get love and attention Miscarriage 48% 49% 49% Get help when sick in bed Pregnancy 81% 44% 44% 0 20 40 60 80 0% 20% 40% 60% 80%100% Much less than I would like Yes No Less than I would like Some, but would like more Yes Yes No No I don't know I don't know Almost as much as I would like As much as I would like 6/1/2020
#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
Participants Quotes Participant s Quotes As both a person with a bleeding disorder and as a researcher, As both a person with a bleeding disorder and as a researcher, I am extremely curious and excited by what is possible with MyBDC! I am extremely curious and excited by what is possible with MyBDC! It is immediately clear to me the value it will It is immediately clear to me the value it will bring study, but to those who are studied (a rare dual feat!). study, but to those who are studied (a rare dual feat!). bringto not only those who to not only those who A huge opportunity exists to push our understanding and to leverage those A huge opportunity exists to push our understanding and to leverage those insights into substantive advancements for the bleeding disorder community. insights into substantive advancements for the bleeding disorder community.
