*Y.C.* Women's Health Initiative
After decades of violence in Kashmir, the Women’s Health Initiative seeks to restore control to women over their own health and well being by building capacity for women to tackle the health issues that affect them the most. WHI’s needs assessment project is the first step to restoring control to Kashmiri women by creating a mechanism for women to guide strategic planning and design WHI activities. Based on preliminary findings, a Breast Cancer program was designed and implemented to give Kashmiri women the knowledge and technical assistance they need to prevent the a disease that disproportionately affects Kashmiri women.
Breast cancer is the second most common cancer among Kashmiri women. The age adjusted rate as per their hospital records was approximately 12.6 per 100,000 individuals per year with a male to female ratio of 0.02:1. The average age at onset of the disease was lower than in western and other parts of India and familial and breast cancer cases were also prevalent in the Kashmir Valley. (1) Breast cancer screening programs are regularly used in developed countries where the incidence of breast cancer is highest, and an extensive healthcare system is already in place. Although the developing world has a lower breast cancer incidence rate, women tend to have a more advanced disease at the time of diagnosis and are at greater risk of dying from it. Cancers detected by self breast-examination tend to be diagnosed at an earlier stage than those not detected by screening, suggesting a greater potential for effectiveness in a setting where the stage at diagnosis is generally poor. (2)
The Women’s Health Initiative seeks to improve public understanding of general medical illnesses in the Kashmir Valley and to initiate the first dedicated cancer prevention program by uniquely pairing local knowledge and indigenous community outreach workers with the international scientific community and donors. Our long-term objective is to establish a largely self-sufficient women’s health program for breast cancer in Kashmir and to promote wider public awareness relating to women’s health.
This will be accomplished through the following mechanisms:
1. Educating the public through free brochures and television advertisements;
2. Developing an epidemiological database to assess cancer and health risk factors, and to identify health status and healthcare practices; and
3. Identifying high risk patients for close monitoring.
The initial program of needs assessment and establishing breast health programs and the initial epidemiological database will be initiated and completed in the district in 6-12 months. Future follow-up at regular intervals will be conducted to evaluate the response and impact of the program. Through this group structure we will be able to train the general population, expand public outreach, reach out discreetly to remote areas, and encourage networking between the Cancer Prevention Program at RPCI in Buffalo, New York and a public awareness team in Srinagar, Kashmir. This will serve as a model for launching similar programs in all preventive aspects of cancer.
References
1. Rafiqa Eachkoti, Ishraq Hussain, Dil Afroze, S. Aejaz Aziz, Mudassar Jan, Zafar A. Shah, B.C. Das, Mushtaq A.
Siddiqi BRCA1 and TP53 mutation spectrum of breast carcinoma in an ethnic population of Kashmir, an emerging highrisk
area Cancer Letters, Volume 248, Issue 2, 18 April 2007, pp. 308-320.
2. Duffy S.W., Tabar L., Vitak B., and Warwick J. Tumor size and breast cancer detection: what might be the effect of a
less sensitive screening tool than mammography? Breast J. 2006, 12 (supplement 1): S91-S95.
About You
Section 1: About You
First Name
Nouf
Last Name
Bazaz
Organization
Guru Charitable Trust Foundation
Country
India
Are you an individual between the ages of 18 and 35 who would like to apply for a nine month Young Champions Program mentored by an Ashoka Fellow?
Yes
Section 2: About Your Organization
Organization Name
Women's Health Initiative
Organization Website
Organization Phone
Organization Address
Organization Country
India, JK
The information you provide here will be used to fill in any parts of your profile that have been left blank, such as interests, organization information, and website. No contact information will be made public. Please uncheck here if you do not want this to happen..
Your idea
Name Your Project
*Y.C.* Women's Health Initiative
Country your work focuses on
India, JK
Describe Your Idea
After decades of violence in Kashmir, the Women’s Health Initiative seeks to restore control to women over their own health and well being by building capacity for women to tackle the health issues that affect them the most. WHI’s needs assessment project is the first step to restoring control to Kashmiri women by creating a mechanism for women to guide strategic planning and design WHI activities. Based on preliminary findings, a Breast Cancer program was designed and implemented to give Kashmiri women the knowledge and technical assistance they need to prevent the a disease that disproportionately affects Kashmiri women.
Breast cancer is the second most common cancer among Kashmiri women. The age adjusted rate as per their hospital records was approximately 12.6 per 100,000 individuals per year with a male to female ratio of 0.02:1. The average age at onset of the disease was lower than in western and other parts of India and familial and breast cancer cases were also prevalent in the Kashmir Valley. (1) Breast cancer screening programs are regularly used in developed countries where the incidence of breast cancer is highest, and an extensive healthcare system is already in place. Although the developing world has a lower breast cancer incidence rate, women tend to have a more advanced disease at the time of diagnosis and are at greater risk of dying from it. Cancers detected by self breast-examination tend to be diagnosed at an earlier stage than those not detected by screening, suggesting a greater potential for effectiveness in a setting where the stage at diagnosis is generally poor. (2)
The Women’s Health Initiative seeks to improve public understanding of general medical illnesses in the Kashmir Valley and to initiate the first dedicated cancer prevention program by uniquely pairing local knowledge and indigenous community outreach workers with the international scientific community and donors. Our long-term objective is to establish a largely self-sufficient women’s health program for breast cancer in Kashmir and to promote wider public awareness relating to women’s health.
This will be accomplished through the following mechanisms:
1. Educating the public through free brochures and television advertisements;
2. Developing an epidemiological database to assess cancer and health risk factors, and to identify health status and healthcare practices; and
3. Identifying high risk patients for close monitoring.
The initial program of needs assessment and establishing breast health programs and the initial epidemiological database will be initiated and completed in the district in 6-12 months. Future follow-up at regular intervals will be conducted to evaluate the response and impact of the program. Through this group structure we will be able to train the general population, expand public outreach, reach out discreetly to remote areas, and encourage networking between the Cancer Prevention Program at RPCI in Buffalo, New York and a public awareness team in Srinagar, Kashmir. This will serve as a model for launching similar programs in all preventive aspects of cancer.
References
1. Rafiqa Eachkoti, Ishraq Hussain, Dil Afroze, S. Aejaz Aziz, Mudassar Jan, Zafar A. Shah, B.C. Das, Mushtaq A.
Siddiqi BRCA1 and TP53 mutation spectrum of breast carcinoma in an ethnic population of Kashmir, an emerging highrisk
area Cancer Letters, Volume 248, Issue 2, 18 April 2007, pp. 308-320.
2. Duffy S.W., Tabar L., Vitak B., and Warwick J. Tumor size and breast cancer detection: what might be the effect of a
less sensitive screening tool than mammography? Breast J. 2006, 12 (supplement 1): S91-S95.
Website URL
Innovation
What makes your idea unique?
WHI believes that the Kashmiri outreach staff lies at the core of a philosophy that represents active community engagement and women’s empowerment. Therefore, WHI uniquely builds the skills and resources of Kashmiris to build a self-sustainable program. As a result, it is insulated from many of the fluctuations in the political and social climate that adversely affect government-sponsored health programs in the region. The program also generates the first health database specific to the needs and concerns of the Kashmiri population. This includes unique dietary needs, cultural practices, social norms, etc. By establishing baseline data, this project will potentially impact changes in practice across the health sector. Lastly, the program disseminates brochures, developed by leading experts at Roswell Park Cancer Institute and translated into Urdu, which meet the need in
Kashmir for published literature about general health issues. It is these innovative characteristics coupled with a working knowledge of best practice models and current scientific breast health guidelines that promote reasonable and fruitful methods for a successful approach. Upon successful intervention in Sopore, WHI will have the resources and recognition needed to attract further partnerships and funding to take the program to the next level geographically and to work toward more advanced breast health interventions (e.g., by utilizing mammograms).
The project will make substantial progress toward promoting global improvement of practices and services to women with breast cancer. The project will disseminate vital breast cancer knowledge to otherwise marginalized Kashmiri communities historically documented for its lack of preventative services.
Do you have a patent for this idea?
Impact
This Entry is about (Issues)
What impact have you had?
WHI, in collaboration with the Population Sciences Program at Roswell Park Cancer Institute (RPCI), has created a comprehensive questionnaire to assess women's health risk factors, health status and healthcare practices. The survey covers pertinent women's health topics including maternal health, cancer, diabetes, hypertension and other health issues. Currently, there have been over 500 surveys completed in Sopore through individual meetings between the local population and WHI outreach workers. A publication of these first 500 surveys is forthcoming.
WHI believes that health education and screening is the first step for women to realize their power in transforming their lives and ensuring a promising future. As such, WHI created and disseminates culturally and linguistically competent, Urdu-language, educational brochures for women pertaining to breast cancer, breastfeeding, jaundice in newborns and diabetes. These are the first brochures of their kind in Kashmir.
Lastly, WHI has been able to make strides in women’s health and development by surmounting the many challenges that stem from decades of political strife. The establishment of local staff and a fully functioning office space has been integral to this process. The outreach staff has not only gained inroads in the community but they have electrified the local population as well. During the first few small group sessions that were held for breast education, women flocked to the houses and huddled around laptops. WHI is proud of the strides that have been made in such a short amount of time.
Problem
Decades of violence in Kashmir have wrecked havoc on political, economic and social institutions. This has adversely impacted the health sector leaving women the most vulnerable. Breast cancer is the second most common cancer among Kashmiri women. The age adjusted rate as per their hospital records was approximately 12.6 per 100,000 individuals per year with a male to female ratio of 0.02:1. The average age at onset of the disease was lower than in western and other parts of India and familial and breast cancer cases were also prevalent in the Kashmir Valley. Breast cancer screening programs are regularly used in developed countries where the incidence of breast cancer is highest, and an extensive healthcare system is already in place. Although the developing world has a lower breast cancer incidence rate, women tend to have a more advanced disease at the time of diagnosis and are at greater risk of dying from it. Cancers detected by self breast-examination tend to be diagnosed at an earlier stage than those not detected by screening, suggesting a greater potential for effectiveness in a setting where the stage at diagnosis is generally poor.
Actions
The Guru Charitable Foundation has been laying the groundwork for a successful breast health intervention in Kashmir for the past year. In conjunction with leading experts from Roswell Park Cancer Institute (RPCI) in Buffalo, New York, The Women's Health Initiative has sought to create many of the necessary tools to building a sustainable pilot project in Kashmir (India). This includes a thorough questionnaire tailored to the local population, the first Urdu-language brochures on breast health in the region, and the identification of local staff to carry out education and outreach activities in the community.
Results
Within the first two months, WHI built a comprehensive epidemiological database, for which a software team was contracted to design in electronic form. WHI also developed brochures on breast self-examinations in the local language based on the standard BSE brochure used at Roswell Park Cancer Institute. Trainers from the United States traveled to Kashmir to train the field workers and supervise data collection. After undergoing five weeks of rigorous instruction, the field workers began educating women house-to-house on the importance and method of performing BSEs. In tandem with this objective, they conducted structured interviews using a comprehensive survey of breast health practices, epidemiological data, and general health status. To date, over 500 interviews, each lasting about 90 minutes, have been completed.
What will it take for your project to be successful over the next three years? Please address each year separately, if possible.
This public awareness program will need to be piloted in 10 villages, whose average eligible female population is 500/village. Following the pilot project, an interim analysis will need to be carried out to inform further outreach and education efforts. An interim analysis of the survey data will also need to be undertaken to assess the need for modifying the survey or implementing preventive measures and care for women with disease states identified while screening and providing education. In addition, two Advisory Committee meetings will need to be held every two months to discuss pitfalls and practical issues. Finally, the services of a local working group consisting of a physician, faculty and students from the University of Kashmir’s Department of Social Work, and a local public health services team will need to be utilized.
After successful completion of the pilot project, WHI will have completed its stated goals:
1. Educating the public through free brochures and television advertisements;
2. Developing an epidemiological database to assess cancer and health risk factors, and to identify health status and healthcare practices; and
3. Identifying high risk patients for close monitoring.
After these goals are met, a largely self-sufficient women’s health program for breast cancer can be established in Kashmir by partnering with and strengthening mammography centers in and around Sopore.
What would prevent your project from being a success?
The biggest factor preventing the project from being a success is the lack of a coordinator in Kashmir linking efforts on the ground to those with the Advisory Committee and internationally. A coordinator in Kashmir is needed to facilitate partnerships with Kashmiri civil society including medical personnel, hospitals, cancer institutions, universities and businesses. These partnerships would ensure WHI's strength and commitment in the region and broaden the scope of its health endeavors. A coordinator on the ground can also more effectively coordinate the efforts of outreach workers and streamline skill building and professional development. Coordination is also needed to monitor data collection and evaluation during the duration of the project. Lastly, continued financial and material support is imperative to continue the hand-on education to Kashmiri women about the health issues that affect them the most.
How many people will your project serve annually?
1001‐10,000
What is the average monthly household income in your target community, in US Dollars?
$50 - 100
Does your project seek to have an impact on public policy?
Sustainability
What stage is your project in?
Operating for 1‐5 years
Is your organization a
Please select
Is your initiative connected to an established organization?
Yes
If yes, provide organization name.
Guru Charitable Foundation
How long has this organization been operating?
1‐5 years
Does your organization have a Board of Directors or an Advisory Board?
Yes
Does your organization have a non-monetary partnerships with NGOs?
Does your organization have a non-monetary partnerships with businesses?
Does your organization have a non-monetary partnerships with government?
Please tell us more about how these partnerships are critical to the success of your innovation.
WHI is currently partnered with medical institutions in Sopore as well as universities in the capital city of Srinagar. These partnerships are imperative to the success of the innovation as they ensure long-term sustainability and build a broad base of support. The knowledge and skills that each partner adds is also integral to the success of the innovation. Investing in the human capital of Kashmiri civil society is tantamount to the success of WHI.
What are the three most important actions needed to grow your initiative or organization?
The Breast Cancer Program is currently in Phase II. Individuals from the United States traveled to Kashmir to train the field workers and supervise data collection. After undergoing five weeks of rigorous instruction, the field workers began educating women house-to-house on the importance and method of performing BSEs. In tandem with this objective, they conducted structured interviews using a comprehensive survey of breast health practices, epidemiological data, and general health status. To date, over 500 interviews, each lasting about 90 minutes, have been completed. It is imperative that WHI acquires the resources to strengthen these efforts.
In the future, WHI will lead a television advertisement campaign – aimed at raising awareness of breast cancer, its prevention, and the importance of early detection – that will reach not just the local community, but the entire region.
Once this public awareness program has been piloted in 10 villages, whose average eligible female population is 500/village, an interim analysis will be carried out to inform further outreach and education efforts. It is critical for an interim analysis of the survey data will also be undertaken to assess the need for modifying the survey or implementing preventive measures and care for women with disease states identified while screening and providing education. In addition, two Advisory Committee meetings will need to be held every two months to discuss pitfalls and practical issues. Finally, the services of a local working group consisting of a physician, faculty and students from the University of Kashmir’s Department of Social Work, and a local public health services team should be convened.
The Story
What was the defining moment that you led to this innovation?
The summation of over 60 years of political violence is the root cause of problems faced in the Kashmiri community. The militarization of Kashmir and the economic and political devastation that has ensued has uprooted the health infrastructure and has rendered private and public institutions futile to meet the demands of the community. Years of mental and physical anguish coupled with mistrust and cynicism has silenced Kashmiris for decades as they grappled with the loss of their autonomy and loved ones.
The Women’s Health Initiative has has concentrated the whole of its efforts on producing health programs that work directly with Kashmiri woman about what their needs are and how those needs can best be met. Our Needs Assessment Project is therefore as much a process of capacity building as it is a final document that will guide future programming. Similarly, our Breast Cancer project provides women with tangible health information and tools to combat debilitating diseases.
The program idea was conceived in June 2008 and the current status of breast cancer in Kashmir was evaluated the following month. An Advisory Committee was then established to coordinate the program’s subsequent development. Within the first two months, GCF began building a comprehensive epidemiological database, for which a software team was contracted to design in electronic form. GCF also developed brochures on breast self-examinations in the local language based on the standard BSE brochure used at Roswell Park Cancer Institute.
Tell us about the social innovator behind this idea.
The Women's Health Initiative is a part of the Guru Charitable Foundation (GCF), a 501(c)(3) nonprofit organization devoted to improving the quality of education and medical care in Kashmir. Two years ago, Dr. Khurshid Guru established the Guru Charitable Foundation to encourage the education of young people and promote better medical care in the region. The educational side of the foundation currently provides scholarships for 245 children in grades 8-12 whose families earn less than the equivalent of $1,000 (U.S. currency)per year.
"This work of the Guru Charitable Foundation is a groundbreaking effort. I am unaware of similar efforts that are working on defining the breast health practices and barriers to breast health care in countries such as Kashmir. The only other work at this level is that of the Global Breast Health Initiative. However, this work is focused on defining guidelines for screening and treatment of cancer in countries with limited resources. To my knowledge, to date the GBHI has not put in place programs to survey the population regarding breast health practices, and to establish breast screening education and treatment programs."
-Stephen B. Edge, MD, FACS
Chair, Dept of Breast & Soft Tissue Surgery
Professor of Surgery and Oncology
How did you first hear about Changemakers?
Through another organization or company
If through another, please provide the name of the organization or company
The Association for Women's Rights in Development (AWID)
