Skip to main content

Currently Skimming:

8 Community Engagement and Patient Advocacy
Pages 353-396

The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.


From page 353...
... • SCD CBOs perform a crucial function in the SCD care delivery eco system, but their efforts are hampered by a lack of financial resources and infrastructural challenges. • Models of patient advocacy from other rare diseases offer key take aways for improving the organization and effectiveness of SCD patient advocacy groups and CBOs.
From page 354...
... HISTORICAL PERSPECTIVE Individuals living with sickle cell disease (SCD) and sickle cell trait (SCT)
From page 355...
... NOTE: CDC = Centers for Disease Control and Prevention; HRSA = Health Resources and Services Administration; HSA = Health Services Administration; NIH = National Institutes of Health; SCD = sickle cell disease. The decade after the National Sickle Cell Control Act was passed featured increased awareness of and efforts to educate the public about SCD and SCT and to develop and evaluate new therapies.
From page 356...
... . To avoid a repeat of the negative consequences associated with the National Sickle Cell Control Act, any national strategy that addresses identified priorities for SCD and SCT requires critical information and feedback from the SCD community.
From page 357...
... SCD CBOs encompass a wide variety of entities, from independent individual advocates to small local groups focused on sickle cell awareness and education to large national groups, including organizations delivering enabling services. These organizations are also involved in community engagement, which is the "inclusion of local health system users and community resources in all aspects of design, planning, governance, and delivery of health care services" (PHCPI, 2018)
From page 358...
... Thus, there is an opportunity to create a comprehensive cataloguing of CBOs and community resources available for the SCD population and to develop a formal characterization and classification of the various services that each offers. Services Offered by SCD Community-Based Organizations SCD CBOs provide a myriad of services beyond awareness about SCD and SCT and advocacy that support and complement health care for children and adults; these include education, counseling, care coordination, and e ­ nabling services (see Table 8-1)
From page 359...
... COMMUNITY ENGAGEMENT AND PATIENT ADVOCACY 359 TABLE 8-1 Community-Based Organization Services Supporting the Needs of Children and Adults with SCD and SCT, Not Including Advocacy Service Description of Activities SCD and SCT •  CD/SCT education individually or at the community level S education Genetic •  ounseling services for SCT and other hemoglobinopathy C counseling traits, such as C, E, and beta-thalassemia services  o  onsumers are referred to hospital-based genetic C counselors for full reproductive counseling Psychosocial • Support groups support •  eer support networks P • Social networks • nformation-sharing networks, such as SCDAA's Get Connected I • Hospital visitation •  ecreational and social activities, such as picnics and other R social outings Camps •  upport for children and young adults to participate in S external camps •  nnual SCD-specific camps A Care •  are coordination at the individual or population level for C coordination adolescents and young adults or older adults • Case management  o  few CBOs can provide in-home nurse case management A services to support the hospital-to-home transition and reduce avoidable admissions Case finding and •  ssisting state health departments and health A referral to care systems/hospitals with finding newborns with positive newborn screening results for SCD •  inding individuals lost to care/follow-up and referring back to F health care •  ssisting sickle cell programs with finding patients lost to care A •  ssisting individuals with SCD in finding a medical home, A particularly a primary care provider and/or a sickle cell expert Enabling services •  ransportation to and from medical and dental appointments T •  ssistance with the maintenance of basic needs, such as A housing, utilities, and food • Caregiver support • Bereavement support •  inkage to community resources L • Child care • Tutoring Clinical trial •  artnering with private industry and hospitals to educate P education and consumers on clinical trial participation recruitment •  ecruitment for open clinical trials R Transition •  ducation on transition E assistance •  ssessment of transition readiness A •  ccompanying young adults to first adult-focused care visit A NOTE: CBO = community-based organization; SCD = sickle cell disease; SCDAA = Sickle Cell Disease Association of America; SCT = sickle cell trait.
From page 360...
... The federal government, in collaboration with relevant organizations, could develop such a toolkit. Providing Enabling Services to the SCD Population CBOs and patient advocacy groups are best positioned to provide certain enabling services, including social and peer support, hospital visitation, and recreational and social activities, to address the isolation and need for community that individuals with SCD have expressed.
From page 361...
... Finally, providing counselor-in-training and counselor positions for, respectively, teens and adults with SCD offers informal peer-mentoring and patient support systems. Although sickle cell camps have been in existence for more than four decades, very little has been published on their key elements or on how the experience affects the lives of individuals living with SCD.
From page 362...
... These positive camp experiences cultivate participation in tutoring, reunions, seasonal parties, and other events. Serving as a Bridge Between the SCD Population and the Scientific and Clinical Community The final and key role of CBOs and patient advocacy groups is to connect individuals with SCD and SCT to the health care system.
From page 363...
... . Clinician scientists and several SCD CBOs across the country recently coproduced a publication that described the role of nonclinical CHWs in SCD care (Hsu et al., 2016)
From page 364...
... This section provides an overview of select CBOs and groups that are recognized for their active programming and patient advocacy efforts in the SCD population. Because there is little research and few publications on the contributions of such CBOs, the groups described here were identified through open session speaker remarks, information provided to the committee and National Academies team, and discussions with relevant stakeholders.
From page 365...
... , founded in 1957, was the first social service nonprofit founded to focus on the needs of the SCD population (Sickle Cell Disease Foundation, n.d.)
From page 366...
... and Endari. In 2015 it established a CHW program funded through the HRSA/SCDAA NBS program to provide care coordination support to help link individuals with primary care medical homes.
From page 367...
... , five CBOs work with four hospitals on issues directly affecting the sickle cell population across the state. PASCPN coordinates efforts to educate lawmakers during the Pennsylvania Supports Sickle Cell Disease Advocacy Day.
From page 368...
... . Sickle Cell Disease Association of America, Michigan Chapter, Inc.
From page 369...
... Local awareness activities, such as charity walks, runs, and golf outings (especially during September, which is National Sickle Cell Disease Awareness Month, and June, which includes June 19 as World Sickle Cell Day) , have still not managed to garner as much national momentum for SCD awareness as has happened for other diseases.
From page 370...
... Successful self-advocacy is based on building effective relationships with the various stakeholders who can influence or meet these needs. In the SCD community, individuals with SCD are often not viewed as "advocates" unless they speak at a conference or participate in a steering committee or professional or governmental working group.
From page 371...
... The committee was unable to find any studies on self-advocacy in the SCD population. However, the patient and panelists meetings at the committee's
From page 372...
... . Other Organizations Addressing the Needs of the SCD Population There are myriad other stakeholders that may not be formally recognized as SCD patient advocates but whose functions may confer the same benefits of patient advocacy.
From page 373...
... Currently, none of the SCD CBOs or patient advocacy groups are empowered to influence change for all aspects of the population's needs, in contrast with groups focused on hemophilia and cystic fibrosis (CF) , as discussed later in this chapter.
From page 374...
... Some CBOs and patient advocacy groups receive state funding, includ ing SCFGA (Georgia) , Piedmont Health Services and Sickle Cell Agency (North Carolina)
From page 375...
... Some have highlighted the inherent conflict that CBOs and SCD patient advocacy groups face in relying on pharmaceutical companies because the funds may not support their programmatic needs. Finally, CBOs and patient advocacy organizations may also fundraise through charity events, such as annual galas, sports events, and conferences.
From page 376...
... Third, advocates living with SCD may find that their health affects their ability to participate in advocacy activities. MODELS OF PATIENT ADVOCACY FROM OTHER RARE DISEASES Two diseases referred to throughout this report, hemophilia and CF, offer valuable models for patient advocacy and community engagement for the SCD population.
From page 377...
... The Hemophilia Patient Advocacy Model The hemophilia patient support landscape is dominated by four wellknown organizations: the National Hemophilia Foundation (NHF) , the Coalition for Hemophilia B, the Hemophilia Federation of America (HFA)
From page 378...
... . WFH uses WBDR data collected to strengthen its efforts to educate key stakeholders and generate awareness about the needs of the hemophilia population (WFH USA, 2020)
From page 379...
... , a group of expert scientists, physicians, allied health professionals, patients, and government liaisons from the relevant federal agencies within the U.S. Department of Health and Human Services, advances the standard of clinical care and issues treatment recommendations for all bleeding disorders (NHF, 2020c)
From page 380...
... Key Takeaways from Hemophilia Patient Organizations for SCD There are factors that have contributed to the effectiveness of CBOs and national organizations serving the hemophilia population. Some of these may not immediately be applicable to SCD organizations, but hemophilia organizations had to overcome challenges with public awareness, patient and provider education, lack of funding, and accessing high-quality, comprehensive care similar to those that now confront the SCD population, so there are some worthy takeaways that could inform the patient advocacy landscape for SCD.
From page 381...
... . SCD CBOs and their patient advocacy efforts are currently siloed, with no organizational model of how the national, state, local, and virtual organizations are working together to address the shared goal of advancing important issues.
From page 382...
... A well-defined model of organization for CBOs and other organizations will streamline efforts and offer guidance for how to leverage their capabilities in the comprehensive care model proposed by the committee in this report. Policy and historical impetus for action Finally, it is worth noting that several policy and historical events have contributed to the effectiveness of hemophilia patient advocacy and community groups.
From page 383...
... The venture philanthropy model was CFF's response to that obstacle: funding drug development with for-profit companies. Since the initial investment, CFF has funded several biopharmaceutical companies, including Pfizer, Genzyme, Editas, and Corbus, and invested $425 million to accelerate drug development for CF (CFF, n.d.c)
From page 384...
... However, it is unclear from the publicly available information how the chapters are organized and operate in conjunction with CFF. CFF, care centers, and chapters are actively involved in generating awareness and working at all levels of government to shape public policy and increase awareness resources.
From page 385...
... . Key Takeaways from Cystic Fibrosis Patient Organizations for SCD The CFF model of patient advocacy is unique in its scope of activities and also reflects a model for how patient advocacy groups can drive efforts in response to the perceived needs, as opposed to change being driven by external factors.
From page 386...
... (Open Session Panelist) CBOs and patient advocacy groups are already actively contributing to the care delivery process, from the initial stages (identifying individuals who screened positive for SCD or SCT for clinical follow-up)
From page 387...
... SUMMARY This chapter summarizes the historical context surrounding the establishment of the SCD CBO and patient advocacy groups for SCD and describes the evolving landscape of SCD CBOs, with a combination of the
From page 388...
... Because SCD is by its nature influenced by stigma, racism, and discrimination, this report is not complete without a uniquely defined role for the cultural brokers within the SCD community, the CBOs, or patient advocates. The committee acknowledges that SCD CBOs provide enabling services that support the physical, mental, and social health of individuals affected by SCD; however, despite their critical importance in the cultural brokerage ecosystem, SCD CBOs are primarily under-resourced in the African American community, underfunded, and dependent on fundraising for their existence, as the business model is focused more on finding funds than on planning activities and then seeking funding sources consistent with those activities.
From page 389...
... Quality metrics developed for accreditation will encourage SCD CBOs to collect and store programmatic and service data for reporting. This will help in making CBO-specific data public so that individuals living with SCD can identify the CBOs that provide the services they need.
From page 390...
... . Improving the ability to partner with others in chronic illness awareness may benefit the SCD community and foster partnerships at the national and local levels.
From page 391...
... They are the informal grassroots network of SCD advocates who should intentionally be sought out, albeit via nontraditional means, and their voice should be included in defining the way forward. CONCLUSIONS AND RECOMMENDATIONS Conclusion 8-1: SCD CBOs provide enabling services that support the physical, mental, and social health of individuals affected by SCD; however, despite their critical importance in the cultural brokerage ecosystem, SCD CBOs are primarily under-resourced in the African American community, under-funded, and dependent on fundraising for their existence, as the business model is focused more on finding funds than planning activities and finding funding sources consistent with those activities.
From page 392...
... Department of Health and Human Services, in collaboration with state health departments and health care providers, should partner with community-based organizations and community health workers to engage the sickle cell disease (SCD) popu lation in designing educational and advocacy programs and policies and in disseminating information on health and community services to individuals living with SCD and their caregivers.
From page 393...
... 2016. Sickle cell disease newborn screening follow-up program.
From page 394...
... . SCDAAMI (Sickle Cell Disease Association of America, Michigan Chapter, Inc.)
From page 395...
... . Sickle Cell Disease Foundation.


This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More information on Chapter Skim is available.