unite sickle cell: collaboration and community in sickle cell · 8/3/2019 · social media 14....
TRANSCRIPT
UNITE SICKLE CELL: Collaboration and Community in Sickle Cell
Mary Brown, President & CEO Jennifer Fields, MPH, Consultant
US Philanthropic Overview
Americans gave $427.71 billion in 2018. This reflects a 0.7% increase from 2017.1
• In 2018, the largest source of charitable giving came from individuals at $292.09 billion ( 68%) of total giving; followed by foundations ($75.86 billion/18%), bequests ($39.71 billion/9%), and corporations ($20.05 billion/5%).1
• In 2018 the majority of charitable dollars went to religion (29%), education (14%), human services (12%), grantmaking foundations (12%), and health (9%).1
According to the most recent data available, there are more than 1.5 million charitable organizations in the US.2
https://givingcompass.org/pdf/key-findings-from-giving-usa-2019-the-annual-report-on-philanthropy-for-the-year-2018/
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A Philanthropic Overview by Race
http://greenlining.org/wp-content/uploads/2013/02/FundingtheNewMajority.pdf
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An Overview on US Health Disparities
According to the Agency for Healthcare Research and Quality (AHRQ) and the National Healthcare Quality Report (NHQR):
• About 33% of the U.S. population identify as members of racial or ethnic minority groups.
• 38.8 million Blacks or African Americans (12.9% )• ^ 45.5 million Hispanics or Latinos (15.1%)• 13.4 million Asians (4.4%)• 0.5 million Native Hawaiians and Other Pacific Islanders (NHOPIs)
(0.2%)• ^ ore than 2.9 million American Indians and Alaska Natives (AI/ANs)
• By 2050, it is projected that these groups will account for almost half of the U.S. population.
• Racial and ethnic minorities are more likely than non-Hispanic Whites to be poor or near poor and are less likely than non-Hispanic Whites to have a high school education.
https://www.ahrq.gov/sites/default/files/wysiwyg/research/findings/nhqrdr/nhqrdr10/minority.pdf
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Disparities in Quality of Care
Disparities in quality of care are far too common:
• Blacks and AI/ANs received worse care than Whites for about 40% of measures.
• Asians received worse care than Whites for about 20% of measures. • Hispanics received worse care than non-Hispanic Whites for about
60% of core measures. • Poor people received worse care than high- income people for about
80% of core measures.
Few disparities in quality of care are getting better:
• Fewer than 20% of disparities faced by Blacks, AI/ANs, Hispanics, and poor people showed evidence of narrowing.
• The Asian-White gap was narrowing for about 30% of core measures, the largest proportion of any group, but most disparities were not changing.
https://www.ahrq.gov/sites/default/files/wysiwyg/research/findings/nhqrdr/nhqrdr10/minority.pdf
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An Unbalanced Scale
Most minority led organizations are leading efforts that impact minority groups, according to Greenline Institute.
And less than 12% of the funding dollars from private giving institutes supports more than 33% of the minority population in the US, of which over 50% report experiencing health related disparities.
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The Critical Importance of
Data
For most corporations and nonprofits especially, data capital is one of our single biggest assets.
Data Sells Our Products – Service
Draws Attention to Our Work and Its Impact
Largely Supports Needs Assessments to Continue Our Work
Data Legitimizes Our Organization
It Allows Us to Continue to Serve
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California Activities
Supporting Grant Proposals
Supporting Legislation and Policy
Supporting Patient Care
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Slides Adopted from Susan Paulukonis
Supporting Grants
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Slides Adopted from Susan Paulukonis
Recent SCDF Grants Supported
by SCDC Data
Sickle Cell Disease Foundation of California
Queens Care Outreach Grant Proposal (funded, evaluation)
GBT Access to Care Grant (funded)
Novartis’ Transition to Care Grant (funded)
Center for Inherited Blood Disorders
HRSA Treatment Demonstration Grant Proposal (funded, evaluation)
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Slides Adopted from Susan Paulukonis
SCDF Policy and Legislation
Supported with SCDC Data
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Slides Adopted from Susan Paulukonis
Supporting Patient Care –
SCDFC and Primary Care
Primary Care Providers for Adults with SCD
Medi-Cal now requires for case management
PCPs are often not knowledgeable
Using Medi-Cal claims, find PCPs with 5 or more SCD patients
Sickle Cell Disease Foundation of California -> outreach to these providers
Support services for their patients
Connection to SCD-trained hematologist or other specialist for PCP support
Potential for them to take on additional patients
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Slides Adopted from Susan Paulukonis
Using Data to Build SCDF Capacity
Building Our Team
Telling Our Story “The Patient’s Voice”
Educating
Reporting and Delivering
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Additional SCDF Data Collection
Points
Camp Crescent Moon
SC Crew Transition Program
SC Crew Mock Clinic
MLK SCD Adult Outpatient Center
California Newborn Screening Trait Follow-up
Social Media
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Data Will Define Your Future
By combing through existing information, observing, and learning from community members, you can gain an overview of the community that you will serve.
Go deeper
Be responsible and accountable
Use data to attract possible donors and create partnerships
Become the go to source in your community and define what your organization can and will do…..
Overcome the barriers!
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WHERE WILL TAKE US
TOMORROW?
Thank You!
Mary Brown
Email: [email protected]
Phone: (909) 743-5226
Jennifer Fields
Email: [email protected]
Phone: (919) 473-3181
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