Tuesday, January 4
Social Work and Advocacy: A Case Example
Andrea Hall, MSW, Thomas K. Kenemore, PhD, and Troy D. Harden, EdD
Since the beginning, the societal mandate for social work has been to help oppressed populations and to change conditions that interfere with their well being. This assignment suggests that advocacy for change is an essential component of practice. Specht and Courtney describe the profession’s mission as “…to help poor people, to improve community life, and to solve difficult social problems” (Specht & Courtney, 1994). They chided the profession late in the twentieth century for abandoning this mission to focus on advancing professionalism and on achieving parity with psychology and psychiatry as a mental health service provider (self-advocacy). During that era, clinical practice dominated as a mental health service and advocacy took a back seat. The current Educational Policy and Accreditation Standards of the Council on Social Work (CSWE) include two competency standards that reflect advocacy: Educational Policy 2.1.5—Advance human rights and social and economic justice; and Educational Policy 2.1.8—Engage in policy practice to advance social and economic well-being and to deliver effective social work services. The CSWE does not require specific advocacy curriculum in foundation–level master’s social work courses.
Social workers have a rich history of advocacy leadership. A stellar foundation for the profession was established by Jane Addams, Sophonisba Preston Breckinridge, the Abbot sisters, and others. While many important initiatives followed, advocacy did not ever become an established specialty or required skill set within the profession or within social work training, as did many variations of direct practice, and as did administration and policy. Community organization options are included in some training programs, and one can usually find advocacy content in course syllabi. The National Association of Social Workers (NASW) and other professional organizations engage in advocacy activity as a part of normal business. However, while advocacy in principal is an essential component of practice, it is not operationally well-developed or integrated into social work practice, education, and training.
More recently, social work practice literature—emerging primarily from Britain, Canada, and Australia—suggests advocacy as an essential component of any practice activity. It emphasizes the necessity of an empowerment ideology to inform and guide helping responses to the experiences of the legitimately oppressed populations the profession is mandated to help (Mullaly, 2002; Houston, 2002; Payne, 1997; Simon, 1994). It defines social work as essentially a political profession, given this mandate. In this emerging literature, the distinction between clinical or direct practice, and advocacy disappears. This ideology requires that our potential clients (service users) educate us about their experience, knowledge, and goals, and help us construct helping strategies. Taken seriously, our potential clients will be most helpful in defining effective intervention and advocacy programs.
Problem: Obtaining Housing with a Criminal Record
This paper describes a current and ongoing example of advocacy, initiated and facilitated by social workers, and led by potential service users. It illustrates the engagement of professionals with an important and underserved oppressed population, folks getting out of jail or prison and returning to their communities. Poor, urban people of color, particularly African Americans, are vastly overrepresented in this population. Adjustment to freedom for the formerly incarcerated immediately includes finding housing, finding employment, managing the confusion and emotional turmoil of re-entry, finding needed substance abuse and mental health services, and carrying around a criminal history. The barriers these individuals face in achieving re-stabilization after release contribute to their ending up in shelters, getting into trouble, and often returning to jail or prison.
As a first step, many without available support systems need housing immediately. In most large cities throughout the country including Chicago, formerly incarcerated individuals are barred from public housing resources due to complex and confusing policies and their uneven implementation by public housing authorities. Recognition of this impenetrable barrier became the focus of an advocacy initiative that is ongoing. Andrea Hall was employed by the Chicago Coalition for the Homeless (CCH) in 2006, her first job after receiving her MSW. For her first assignment she was asked to interview one hundred individuals in homeless shelters. She quickly learned that many of the men she interviewed had criminal or arrest records, and had had their applications to public housing facilities or applications for vouchers summarily rejected. She brought her concerns to the CCH staff, which included research and policy experts and a community organizer, and was soon assigned to develop a committee to explore the issue.
Within a short time a Re-entry Committee was convened, consisting of several individuals with histories of incarceration (some living in shelters designed to assist with re-entry), service providers, Illinois Department of Corrections (IDOC) staff, CCH board members, and faculty from the Department of Social Work at Chicago State University. The first few meetings were raucous, emotionally charged, and dominated by posturing of service providers about how best to help individuals with adjustment to freedom, and discussions about difficulties experienced with re-entry. Homelessness and difficulty obtaining and maintaining appropriate housing emerged as the primary concern of the group, followed by challenges to employment.
Andrea, who became the group’s facilitator, determined that a period of exploration and study was needed to achieve an appropriate advocacy focus. The individuals on the committee who were experiencing re-entry led most of the discussions and provided credible and powerful descriptions of both challenges and resilience. Chicago Housing Authority (CHA) became the main focus of concern as most of the re-entry participants had experienced rejection in their attempts to apply for public housing or housing vouchers (Section 8), or had assumed or been told they could not get into public housing with a criminal background.
A question that emerged from this learning period was: What are CHA application and access policies as they relate to individuals re-entering communities from prison or jail, and how are they implemented? A seemingly straightforward question was soon discovered to be very hard to answer. Federal exclusion policies that relate to this population are limited and clear, reflecting the national ideology of the “war on drugs.” They basically exclude certain individuals: those evicted in the past three years because of drug-related criminal activity; those who are registered sex offenders; persons who have been convicted of making methamphetamine on the premises; those who are currently engaged in illegal drug use; or those who are using alcohol in a manner that interferes with health, safety, or peaceful enjoyment of other residents. No federal exclusions relate to arrest, incarceration, or re-entry.
Cities receiving federal funds for public housing must adhere to these rules, but are free to establish additional rules. CHA rules currently indicate that applicants to public housing or vouchers will be denied if they or a household member has engaged in any drug-related or violent criminal activity during five years prior to application. This is a much broader sweep, and open to wide interpretation. Furthermore, dialogues reported between applicants and CHA officials suggest there is a great deal of interpretation, no transparency, and no monitoring of how applicants are responded to. According to many stories of attempts to access public housing and individual legal challenges, the “five year period” is often interpreted as applying to dates of any arrests, dates of incarceration, or dates of any involvement with the criminal justice system including post-incarceration probation. The policy effectively bars any applicant who has been involved with the justice system during the past five years. A vast literature on re-entry focusing on recidivism consistently shows that the most vulnerable period for individuals released from jail or prison, and the highest rate of recidivism, is within the first two years after release. CHA applicants in this population are those with fewest resources or support systems. The CHA policy ensures that this population, which is most in need of stable housing immediately upon release from prison, will not be able to successfully apply.
Developing a Plan
Focusing on the policy issue, the committee looked nationally and found an example in Seattle, Washington, in which a restrictive policy had been positively changed, resulting from advocacy initiatives. National and local explorations indicated that application and access policies vary greatly by city, county, and town, and tend to be more restrictive than federal policy. Locally, CHA staff members were invited early on to meet with the advocates, and explained current policy.
The committee developed a position paper summarizing the problem and pointing to a solution to the CHA policy itself. The paper requests three policy changes:
- Applicants will be denied only if there is proof of conviction of a drug-related or violent criminal act during the twelve months prior to application.
- The date a proven criminal act occurred is used as the start date for the twelve month period; arrest records cannot be used as proof; no denial is allowed for any offenses that occurred prior to the twelve month period; and establishment of an advisory committee to review applications.
- Applicants should be notified formally of a denial based on criminal record and have the opportunity for a mitigation hearing within thirty days of the denial.
In August 2009, Andrea serendipitously met the CHA Chief Executive Officer Lewis Jordan on the Chicago Blue Line train. Andrea took full advantage of this unique opportunity and introduced herself. She informed Mr. Jordan about the CCH Re-entry Committee and their position paper on access to Section 8 vouchers for the formerly incarcerated. By the end of the train ride, Mr. Jordan had verbally committed to meeting with the Re-entry Committee after receiving the committee’s position paper, and agreed to invite CCH staff to a Collaborative on Re-entry event on housing for the formerly incarcerated.
The position paper went through many changes before its public release in April 2010. Before the release, the committee obtained community input from stakeholders including formerly incarcerated individuals and the organizations representing them, academics, social service providers, housing lawyers, policy makers, and influential entities who work on criminal justice issues. On April 29, 2010, the Re-entry Committee held an ally meeting at St. Leonard’s Ministry (a model organization providing services to formerly incarcerated men) to introduce the position paper and to get feedback about the paper and next steps from the community. Over fifty people attended this event, and many signed on as endorsers of the position paper. By the time of the planned meeting with CHA leadership, over 100 endorsements had been obtained.
Committee representatives met with Lewis Jordan and other CHA personnel on May 19, 2010, and presented their position paper titled “Barred from Housing.” CHA personnel expressed their concern about the housing issue, but indicated that CHA does not bar individuals with criminal backgrounds from housing. Andrea referred them to the many endorsers who support CHA making the requested and needed policy changes, and assured them that the community would support the recommended changes. Andrea also informed CHA that the “word on the street” was that individuals with criminal backgrounds were in fact being banned from CHA housing.
CHA responded, expressing shared concern about housing for individuals re-entering society from prison and interest in continued dialogue, but not responding to the three “asks” (the three requests for policy changes stated above). As of September 2010, the committee is requesting a second meeting with CHA leadership. Utilizing the Freedom of Information Act, the CCH has requested and received data from CHA regarding the number of denials resulting from criminal histories over the past ten years, and the number of requests for informal reviews after being denied housing. Both sets of numbers are very small. It is becoming increasingly apparent that there is a large gap between CHA data and general perceptions among formerly incarcerated individuals and the organizations that serve them. Questions that are emerging include: How are letters of denial received? How accessible is the option of informal review? What are standards for that informal process? How informed is the general population and the population of individuals with criminal records about CHA application policies? How is the application/denial/review process monitored? How are the current policies implemented and monitored? The Re-entry Committee is currently revising its third policy change request to allow applicants with a criminal history to demonstrate their readiness to live in public housing when such history is first identified, rather than in response to a denial.
This is a case example of social work advocacy practice in process; the outcome is not known, and many players will be involved in its progression. It will likely involve bringing pressure to CHA to effect policy change while maintaining a positive relationship with them; further research and involvement of individuals with criminal records in developing and strengthening the case for policy change; use of the established collaborative relationships with organizations and institutions supportive of the recommended changes; and increased public awareness of the problem. This focused effort is a small step in changing the complex social conditions that oppress and disadvantage the locally and nationally large population of individuals who have been arrested, convicted of a crime, and/or incarcerated. A recent, excellent work by Michelle Alexander, The New Jim Crow: Mass Incarceration in the Age of Colorblindness, effectively describes and explains the overrepresentation in prisons and jails of African American men, and other men of color.
Hopefully this example illustrates some essential characteristics of advocacy. First and foremost, it must be led by and represent those individuals who are most impacted by the current status and who would benefit most from the recommended changes, in this instance the individuals who need public housing and have criminal records. Second, establishing a cohesive advocacy group representing a wide range of important stakeholders will enhance continuity of the advocacy process. Third, obtaining a clear focus and clear goals informed by research and other evidence is essential to the credibility of challenges to established policies, protocols, and procedures. Fourth, strategic planning, persistence, and passion are required to sustain the activities necessary to bring about real change. The population of people re-entering society after incarceration is large, disadvantaged, oppressed, and in great need of social work services. The described advocacy process described confirms the need for the social work profession to learn from them about their experiences and concerns, as recommended by the established empowerment protocol recommended by Paulo Friere (1970, 1992), and deeply embedded in social work’s historical ideology.
- Alexander, M. (2010). The New Jim Crow: Mass incarceration in the age of colorblindness. The New Press.
- Council on Social Work Education (CSWE) EPAS; www.cswe.org.
- Friere, P. (1970). Pedagogy of the oppressed. New York: Continuum.
- ________ (1992). Pedagogy of hope: Reliving pedagogy of the oppressed. New York.
- Houston, S. (2002). Reflecting on habitus, field and capital: Towards a culturally sensitive social work. Journal of Social Work, 2(2), 149–167.
- Mullaly, B. (2002). Challenging oppression: A critical social work approach. Oxford University Press.
- Payne, M. (2005). Modern social work theory (3rd ed.). Chicago, IL: Lyceum Books, Inc.
- Simon, B. (1994). The empowerment tradition in American social work: A history. New York, NY: Columbia University Press.
- Specht, H., & Courtney, M. (1994). Unfaithful angels: How social work has abandoned its mission. New York, NY: The Free Press.
Posted on 01/04/11 at 01:51 PM (0) Comments
In making an experience-based case for research advocacy in Africa and suggesting a framework for building it, this paper covers factors such as basic tenets of patient advocacy, key components and urgent needs in building strong research advocacy, concepts and approaches from which guidance might be taken, and the feasibility of its development and growth throughout the continent. Research advocacy is defined as the meaningful engagement of patient advocates and their representatives in the research system.
As the clinical research system in Africa is developing and gaining strength, this is an opportune time for research advocacy to form and take root as an embedded component in the research structures on the continent. That is, the current state of development of the research system and the simultaneous interest in and rise of patient advocacy bode well for the likelihood of developing robust research advocacy, suggesting its feasibility. Even so, several developments are urgently needed to build, shore up, and sustain a framework receptive to maximizing the influence of an active network of patient advocates—many training in the subspecialty of research advocacy—and a research structure that supports and embeds advocate engagement.
In providing a case and framework for research advocacy in Africa, this paper draws on the experience of and infrastructure for research advocacy in the United States of America (America), where it is an increasingly present and influential component of the research landscape, and on lessons learned and observations made over a 16-year period of active advocacy. Conclusions are also drawn from engagement with an incredible array of patients, survivors, caregivers, and others involved in advocacy and in the research system. (See Additional file 1, “A tribute to patients and survivors.”)
The modes of research advocacy throughout Africa will differ from their American counterparts. They will be aligned with country and regional norms, cultures, religions, languages, and support. However, they can be informed by the significance and uniqueness of contributions of those who provide patient perspectives in American cancer and research communities. Over nearly three decades, at least since the founding in 1986 of the cancer survivor-led National Coalition for Cancer Survivorship , the impact of patient advocacy has grown significantly. The essential framework in Africa—the structure on which advocacy will stand—can be built on principles that contribute to the success and influence of patient and research advocacy in America.
Although patient advocacy is not a new concept in Africa, it is a largely nascent one, with groups like the Breast Cancer Association of Nigeria, Tanzania 50 Plus Campaign (prostate cancer focused), and People Living with Cancer (an umbrella organization focused on South Africans living with cancer) dotting the health landscape. Such groups and the growing continental research capacity are bolstered through the work of organizations like the African Organisation for Research and Training in Cancer (AORTIC). Formed in 1983, AORTIC’s key objectives are “to further the research relating to cancers prevalent in Africa, support the management of training programs in oncology for health care workers, deal with the challenges of creating cancer control and prevention programs and raise public awareness of cancer in Africa” . Advocacy can also be strengthened by looking to the considerable American experience with and literature on patient advocacy, cultural competence in research, and community-based participatory research (CBPR).
The 2006 World Cancer Declaration recognized the following: “By 2020, more than 16 million new cancer cases and 10 million cancer deaths are expected annually. Seventy percent of these deaths will likely occur in developing countries that are unprepared to address their growing cancer burden” . These projections highlight the urgency for improved cancer control, management, and care and for “collective action.” Research advocates and other advocates can prove instrumental in denying these projections a more solid foothold.
Basic tenets of research advocacy: making the case for it
Patient advocacy includes many subspecialties, a fairly new but influential one being research advocacy. It is useful to have a shared definition of a patient advocate to discuss the value of patient and research advocacy. The America National Cancer Institute (NCI) defines a patient advocate as “A person who helps a patient work with others who have an effect on the patient's health, including doctors, insurance companies, employers, case managers, and lawyers.…Cancer advocacy groups try to raise public awareness about important cancer issues, such as the need for cancer support services, education, and research. Such groups work to bring about change that will help cancer patients and their families” . Incorporated in the litany of services and engagement is research advocacy, the meaningful engagement of patient advocates and their representatives in the research system, which is integral to changes in health care research and service delivery.
The case for research advocacy in Africa is straightforward. There is an urgent need for all stakeholders to converge, there is an opportunity for mutual benefit and growth as the research system takes form and begins to mature, and there are examples of advocacy-at-work from which Africa can learn and model. As in the American model, research advocacy will strengthen the research process, change the way researchers see patients and consider patient needs, and keep patients at the center of research thinking and conduct. Research and other patient advocates will:
• Put faces on the disease. Many researchers will have encountered only the most ill patients at their very worst.
• Give voice to all patients and survivors. Patient voices are unique, experience-based, and indispensable, and patients will need to have the courage to become public about issues considered private and often stigmatic.
• Ask questions specific to the lived experience of cancer.
• Create a sense of urgency, by their very presence.
• Form mutually respectful and beneficial partnerships and relationships with researchers. This is a significant challenge, perhaps even a barrier, in a research system that within some cultures has strict lines of separation along lines of authority, responsibility, and class.
• Provide hope for patients, as patients need the example of survival and peer support.
All of these will result in the conduct of research more focused on issues important to patients, more patient-friendly, and more likely to accrue, increasing the prospect of ultimate benefit to patients.
A framework, not the framework
Given the case for research advocacy and the unusual opportunity for it to develop in concert with the research system on the continent, a possible framework, as opposed to the only workable structure, is suggested. This structure aligns with basic components of research advocacy as it is practiced in America. Groups and individuals should feel free to borrow liberally from whatever will work in country-, culture-, and population-specific settings. It is not necessary to reinvent the wheel, but the wheel must be usable on African roads and byways. Embedded in the wheel of American patient and research advocacy are concepts and models such as community-based participatory research (CBPR) and “cultural competence” in research. These concepts largely address often significant concerns related to culture-, language-, and population-specific differences.
The proposed framework is based on a partnership between advocates and researchers, a natural alliance of individuals with like goals and differing but complementary experience and skill sets. This alliance must be nurtured in Africa just as it continues to be nurtured and to mature in America through training, ongoing engagement, and growing mutual respect. CBPR, which is defined as “a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings” , asserts the importance of full community participation in all elements of the research process. In fact, the research topic must be one of importance to the community being researched, and the research findings must be reported to the community. There are numerous examples of CBPR’s adaption and success in America from which African countries can draw. One example is the Deep South Network for Cancer Control, a Cancer Network Program funded by the NCI Center to Reduce Cancer Health Disparities and dedicated to building on “established community and institutional capacity in order to eliminate cancer health disparities by conducting community-based participatory education, training and research” .
Research advocacy should be seen as critical for the most patient-cantered, accruable research, as modelled in CBPR. It is not, however, easy or for the faint of heart or for the easily discouraged, a short-term project, or free of costs. For example, it requires significant funding, time, and effort. It also requires: (i) dedicated advocates; (ii) a supportive advocacy network and research system; (iii) an evolving state of mutual respect and acceptance between advocates and researchers; (iv) ongoing training and preparation for advocates and researchers; and (v) private and public sector investment and support. To promote the growth and influence of a viable and active patient advocate network, the advocacy framework must be country-specific and African-led, with support from countries and regions with more longstanding and robust networks.
Becoming an advocate
To provide ongoing research advocacy coverage, a pipeline of willing and able volunteers must emerge. This pipeline of advocates can come from any walk of life, with many research advocates beginning their efforts in the subspecialties of support, community outreach, education, political, and fundraising. Whatever their route of entry, they are everyday citizens, including:
• Patients, survivors, family members, and caregivers.
• Curious, willing learners with or without a science or medical background.
• Clear communicators and listeners with the ability to read, write, and/or speak in the language of the populations represented or served.
• Members of health advocacy groups or other activist efforts.
• Scientists and clinicians personally affected by cancer.
• Other interested individuals with the time, lifestyle ability, and commitment to ongoing training and continuous education in the name of health care access, patient benefit, needed change, and the common good.
This volunteer army of advocates can train and prepare for research advocacy through numerous mechanisms. Many are drawn to advocacy through personal or family experience with cancer. They must however be motivated to become fully participatory through several initiatives, including: (i) individual study; (ii) advocacy group interaction and training; (iii) local, national, and international programs focused on research training and networking; (iv) attendance and participation at scientific meetings; and (v) online resources if available. This list is not comprehensive, and individuals and groups can explore additional opportunities for research advocacy training. For example, the Scientist-Survivor Program held at the American Association for Cancer Research Annual meeting is designed to build partnerships between scientists and patients/survivors. It “exposes advocates to special lay-language lectures, small group discussions and other interactions that provide a solid background in cancer research” . The program offers an excellent training opportunity, and advocates from all over the world participate and network through the program.
Once trained, research advocates will grow in proficiency and influence, providing patient perspectives and keeping the focus firmly on patients. They can serve on ethics committees, concept and protocol review panels, research teams, grant funding panels, and other research-focused groups. While their opportunities and responsibilities may vary across the continent, within countries, regions, and ethnic groups, research advocates are important in the research process. Thus, they should be willing to share their stories (primarily focusing on the collective experience of patients and survivors), be persistent but not longwinded or self-important in providing the patient point-of-view, demonstrate deep concern and passion without conveying displaced anger and resentment, and build relationships rather than mark territory. They must stay focused on optimal patient benefit and outcomes.
In focusing on patient benefit and outcomes, research advocates concentrate on specific lines of inquiry and often frame their comments and concerns as questions. For example, they might ask:
• What can this research mean in terms of care, quality of life, and/or survival? Could the results change practice or add treatment options?
• Does the trial include provisions to overcome possible barriers to patient participation such as distance from the trial site, frequency of visits, incidental costs, and language and culture-related issues?
• How tolerable are the side effects of the experimental drugs and/or procedures?
• Outside of the clinic or hospital, will the drug be easy or practicable to take or administer?
• Will trial participants be able to work and/or take care of home responsibilities and remain on the trial?
• Who will supply the experimental drugs? Will there be a cost to trial participants?
• Who and what (groups, documents, and procedures) will protect the interests and safety of trial participants? Do you know who from the family or cultural group must be present to make the decision about trial participation?
No one is better positioned to ask such questions or has more at stake than patients and their advocates. Of course, the actual questions asked and areas of focus will be specific to local and population-specific concerns and realities.
The feasibility of research advocacy in Africa
The formation and first-year efforts of the African Cancer Advocates Consortium (ACAC) answer the question of whether a viable African advocacy network is possible. It was formed, with 51 charter members, after the “International Workshop on Cancer Advocacy for African Countries” conducted during the 2011 AORTIC Conference. In its first year, ACAC members have remained engaged working on several initiatives. For example, ACAC members were instrumental in providing case studies for the “Cancer Advocacy Training Toolkit for Africa” published by AORTIC, the African Oxford Cancer Foundation (AfrOx), the European Society for Medical Oncology, and the Union for International Cancer Control . In addition, the ACAC leadership proactively alerts African advocates about advocacy education and training opportunities. ACAC is the beginning of a robust network, with regional and subspecialty representation (including research advocacy). In a message to “Toolkit” users, David Kerr, founder and trustee at AfrOx, noted, “One of the most important ways we feel we can help to reduce the burden of cancer in Africa is to work with African cancer advocacy organizations to help educate and advocate about cancer in their countries” .
Research advocacy is both feasible and doable. Active existing advocacy groups, AORTIC support and workshops that provide training across advocacy subspecialties, the regionally and subspecialty diverse ACAC model, and the “Toolkit” serve as early evidence.
Urgent needs for forward movement
Among the most urgent needs in developing sustainable and robust research advocacy in Africa are:
1. Public awareness efforts that put cancer on the priority list of health issues in Africa.
2. A research structure that supports and embeds research advocacy in its structure as a core value-added component.
3. Active recruitment and development of a core and pipeline of interested patients and other activists.
4. Ongoing training programs built, in part, through collaboration and shared cornerstones among advocacy groups across the continent and from other regions of the world.
5. Global partnerships among advocates, researchers and clinicians.
The power of collective action and networking: advocacy experience
In 2005, while traveling in Kenya, the author and her daughter Nneka spent time in an HIV/AIDS Collective in a rural village (Figure 1). The vast majority of its residents are HIV-positive women and young children, with most of the husbands, fathers, and other adult males having died from AIDS or AIDS-related complications. To support the village, the surviving women sell lovely baskets they weave. In an environment perhaps hostile and unwelcoming, these courageous women also develop and present plays to educate others about HIV/AIDS and their experiences living with the infection or the disease. This lovely ensemble gave a special performance for the four purposeful travellers who made up our party, demonstrated the use of PUR (a tablet used to purify water from a pond they share with animals as a common drinking source), cooked a simple but filling meal (without request, providing the four of us with forks as all others ate communally by hand), and honored us with their generosity and hospitality. We asked for nothing, and they gave their all to us and the community.
The power of collective action An HIV/AIDS Women’s Collective in a Kenyan village that supports its members through basket weaving and educates others through plays on HIV/AIDS. The spirit and dedication of the group demonstrates the power of...
The connection of this experience to the creation, growth, and influence of patient advocates and research advocacy is clear to the author. Without fanfare, this village demonstrates the power of collective action and networking. And, it is an illustration of the author’s belief that “Nothing is beyond the reach of a group of dedicated, passionate people…anywhere or under any circumstance on the planet.” Patient advocates—including research advocates—can be one such dedicated, passionate force, changing the landscape of cancer in Africa and working to defy the dire cancer incidence and death projections in this region of the developing world.
The case for research advocacy in Africa is clear, and the framework suggested is usable although not necessarily the shape that research advocacy will take in countries and regions of Africa. In short, the framework includes the creation of a partnership between advocates and researchers, public and private support and investment, a research system that values patient input and embeds research advocacy, a pipeline of individual citizens willing and able to be (become) research advocates, judicious borrowing from and tailored use of already established models and concepts, and ongoing training and preparation. But the devil, of course, will be in the details and in the doing.
Advocates, through whatever subspecialty they engage, can make a difference in cancer awareness and prevention, incidence, care, and outcomes across Africa. In fact, they have already begun to do so. The only qualifier is the requirement for action, that is, moving beyond the rhetoric of urgency, recommendations, grand statements to practical steps, assignments, reasoned collaborations, pilot projects, and implementation. These are all feasible, all doable, all necessary.
List of abbreviations used
AORTIC: African Organisation for Research and Training in Cancer; ACAC: African Cancer Advocates Consortium; AfrOx: African Oxford Cancer Foundation; CBPR: Community-Based Participatory Research; NCI: National Cancer Institute.
The authors declare that she has no competing interests.
MJS wrote the article.
A tribute to patients and survivors This is a tribute to cancer patients and survivors who give so much of themselves even as they struggle through their own cancer journeys. In 2005, the author and her daughter Nneka Scroggins planted a tree on the Masaai Mara in Kenya in honor of cancer survivors everywhere.
Click here for file(1.0M, JPG)