Advancing Breast Cancer Advocacy in Eastern Europe and Central Asia: Findings From Women's Empowerment Cancer Advocacy Network (WE CAN) Summits.

PURPOSE: Breast cancer civil society organizations have emerged in Eastern Europe and Central Asia to raise awareness about cancer as a survivable disease and provide patient support. We explored the experiences and priorities of these organizations with the goal of making recommendations to advance cancer advocacy and improve cancer care.
METHODS: We conducted in-depth interviews and focus group discussions with representatives of civil society organizations attending the 7th Women's Empowerment Cancer Advocacy Network Summit in Romania in 2015. Interviews were audiorecorded, transcribed, coded, and analyzed for key themes. Findings were discussed at the 8th Women's Empowerment Cancer Advocacy Network Summit in Ukraine in 2017 to ensure accuracy.
RESULTS: We conducted nine in-depth interviews and three focus group discussions with a total of 36 participants. Survivor- and oncologist-led organizations played an important role in filling existing gaps in public health care systems through awareness raising, patient support, and advocacy to improve early detection and access to treatment. Barriers to these efforts included persistent stigma, mistrust of patients toward the public health care system, limited access to evidence-based guidelines, difficulty adapting existing best practices to their setting, and insufficient involvement of policymakers. Key facilitators of advocacy efforts included effective local and international partnerships with physicians, like-minded organizations, and policymakers to facilitate access to educational resources, improve breast cancer early detection and care, and catalyze meaningful policy change.
CONCLUSION: Our findings highlight the value of providing opportunities for advocates to connect and share experiences. To advance cancer advocacy and improve cancer care, the following needs were identified: dissemination of resource-adapted information for improving outcomes; needs assessments; improved program-monitoring practices; and fostering and promotion of collaboration between advocates, medical professionals, and local governments.

BACKGROUND

Breast cancer is the most common cancer in the world, with 2,088,849 new cases and 626,679 deaths annually.[1] Barriers to improving early detection and quality of life have been understudied in Eastern Europe and Central Asia (EECA).[2]

CONTEXT

Key Objective

To our knowledge, this is the first article to present the key facilitators and barriers to breast cancer advocacy in Eastern Europe and Central Asia from the point of view of patient advocates.

Knowledge Generated

Barriers to these efforts included persistent stigma, mistrust of patients toward the public health care system, limited access to evidence-based guidelines, difficulty adapting existing best practices to their setting, and insufficient involvement of policymakers. Key facilitators of advocacy efforts included effective local and international partnerships with physicians, like-minded organizations, and policymakers to facilitate access to educational resources, improve breast cancer early detection and care, and catalyze meaningful policy change.

Relevance

To increase the ability of advocates to improve breast cancer care and outcomes, the following needs were identified: dissemination of resource-adapted information for improving outcomes; needs assessments; improved program-monitoring practices; and increased collaboration between advocates, medical professionals, and local governments.

EECA countries vary in income,[3] health care expenditure per capita,[4] and breast cancer incidence and mortality[1] (Fig 1) and have political and health care systems that diverged following the dissolution of the Soviet Union. However, they share a recent common history and have a young, vibrant civil society, including patient and cancer advocacy organizations.

FIG 1

Characteristics of EECA countries with respect to income; health care expenditure; and breast cancer incidence, prevalence, and mortality, sorted by high to low health care expenditure per capita.1,3,4 aHigher mortality or incidence is more favorable; for reference, ratios for countries in Western Europe and North America are approximately 4-5.5; higher ratios are in green, medium in blue, and lower in orange. bCountries were low middle-income at the time when study data were collected. USD, US dollars

Incidence-to-mortality ratios in EECA do not always track with country income or health care expenditure per capita (Fig 1). Needs assessments to inform evidence-based strategies for improving general cancer care are scarce[5,6] and do not exist for breast cancer. Higher breast cancer mortality in EECA countries is attributed to late-stage diagnosis as a result of patient-related and health care system–related factors[7-12] and insufficient access to treatment.[13] Quality of life for patients can be improved through greater access to psychosocial support[13] and palliative care.[5,14]

Advocacy by patients, survivors, and civil society organizations (CSOs) has been recognized by the international cancer community as vital to improving breast cancer care and outcomes.[15,16] Countries can provide a foundation for advocacy efforts by monitoring trends in breast cancer stage at diagnosis and factors resulting in delays in care and collaborate with advocates to collect and disseminate information about the effectiveness of breast cancer early detection and treatment programs and policies.[15,16] A conceptual framework for engagement of patient advocates that includes a focus on the patient voice; capacity-building; and technical assistance to patients, survivors, caregivers, and CSOs followed by fostering collaboration between key stakeholders to implement a Call to Action on Cancer and continued monitoring of efforts has been implemented in South Africa and Japan and has broad applicability.[16]

Cancer advocacy in EECA countries is young, with CSOs first emerging in the late 1980s. Political and economic instability, as well as corruption, in the region resulted in less resources available for health care and scientific research, whereas distrust toward the international community left over from the Soviet Union and language barriers initially limited collaborations in cancer-related research and medical care. Survivor- and oncologist-led cancer CSOs were established to fill gaps in public health care systems and worked to lift stigma of cancer as a death sentence, improve early detection, and increase access to cancer treatment and psychosocial support.[17-19] A deeper understanding of experiences and priorities of breast cancer CSOs in the region has the potential to help patient advocates and oncologists to improve cancer care.[20-24]

The Women’s Empowerment Cancer Advocacy Network (WE CAN), based at the University of Washington School of Medicine, provides evidence-based education and advocacy mentoring and fosters connections between patient advocates, clinicians, and policymakers to improve awareness and access to cancer care, reduce stigma, and promote changes in policy and social norms.[25] Since 2003, WE CAN has hosted biennial summits in EECA, contributing to increased cancer knowledge and engagement of survivors in cancer policy, as well as new initiatives and collaborations.

We identified themes in breast cancer advocacy from the perspective of participants of EECA WE CAN summits with the goal of developing recommendations for advancing cancer advocacy and improving cancer care.

METHODS

We conducted semi-structured in-depth interviews and focus group discussions (FGDs) with participants of the 7th WE CAN EECA Summit held in Bucharest, Romania, in October 2015. All attendees were invited to and agreed to participate in FGDs. In-depth interview participants were purposefully selected to a maximum variety of viewpoints. Basic demographic data and information about their organizations’ activities were collected.

Interview guides were open-ended and explored organizational activities, collaboration with local and international organizations, and barriers to and facilitators of advocacy efforts. Interviews and FGDs were audiorecorded, transcribed, and translated into English. A codebook was developed on the basis of emergent themes.[26,27] D.K. and N.A. coded the transcripts; discrepancies were resolved through discussion. Results were presented to participants of the 2017 WE CAN Summit in Kiev, Ukraine, to ensure accuracy.

Study procedures were approved by the Institutional Review Board of the University of Washington School of Medicine. All study participants provided written informed consent. Travel and accommodations were covered by WE CAN for all participants.

RESULTS

Study Participants and Characteristics of Participating Organizations

All 36 representatives of cancer CSOs agreed to participate in FGDs; participant characteristics are described in Table 1. Nine in-depth interviews were conducted, including with breast cancer survivors, CSO representatives, and oncologists from Armenia, Belarus, Kyrgyzstan, Lithuania, Moldova, Russia, and Ukraine.

TABLE 1

FGD Participant Characteristics

Participants represented CSOs with experience in patient support and education, cancer early detection, and policy engagement (Table 2). Survivor-led CSOs emerged to respond to the psychosocial needs of women diagnosed with cancer and partnered with local oncologists to reach patients.

TABLE 2

Cancer CSOs in EECA and Their Advocacy Activities

Sixteen years ago, people were afraid to speak about this problem. We started to talk about breast cancer, since we faced it. Now there are seventeen volunteer organizations in Ukraine that visit oncological centers weekly and provide information and psychological support to women after diagnosis or during treatment.—Ukraine

For us, Muslims, this is a very closed topic. Women are afraid their men will leave them. I am trying to tell women, they have to live for themselves, for their families. I am trying to help them to find wigs and silicone implants to ease their condition. I eliminated the idea that cancer is horrible. With my own example I lead them forward.—Kyrgyzstan

Oncologist-led organizations focused on improving early detection and access to treatment, including by providing legal support to patients and lobbying local governments and partnered with survivors to raise community awareness and lift cancer stigma. Collaborations with local governments and international cancer organizations resulted in access to funding, technical expertise related to early detection and treatment, and advocacy training. Survivor-led organizations tended to be volunteer-based, channeling limited resources to patient support.

Themes in Breast Cancer Advocacy

Key themes included stigma, trust and relationships, and knowledge and institutional capacity. The main priorities included expanding early detection and improving access to treatment and patient support.

Stigma as a Barrier to Advocacy Efforts, Early Detection, and Patient Care

Although voices of survivors were essential to increasing awareness about breast cancer, stigma interfered with the ability of some patients to share their stories.

Cancer is almost always a taboo. Even cancer survivors are not prone to saying that they had this disease.—Armenia

We found a woman, a university professor, and she was able to speak about [her diagnosis] openly. But after some time, her family told her, why are you doing this? Why are you continuing to talk about this? Stop. So, she closed up and we have lost contact with her.—Kyrgyzstan

Stigma surrounding cancer persisted, interfering with early detection, timely treatment, and patient support.

We would like to raise awareness among women so that they can overcome the vacuum of information. Women do not trust us as much as they would trust patients, survivors. But in the regions, these patients are hidden, because of stigma.—Belarus

Trust-Based Relationships and Collaborations as the Cornerstone of Effective Advocacy

Although it took years to establish mutual trust and respect, effective partnerships with local oncologists were essential to supporting patients’ needs and improving outcomes.

The chief oncologist helped us with information and by accepting our volunteers when in many clinics they would not let us visit. It took several years to show the doctors that we are not against them, that we are professional, that we work with volunteers to engage people, not to protest.—Ukraine

The mistrust toward the public health care system as a result of lack of transparency in patient-physician communication and corruption related to treatment availability was a key obstacle to early detection and treatment.

We have 3,000 women who have breast cancer with good one-year survival, because we used to have free chemotherapy, even Herceptin. Now [the government] is out of money. You can get treatment in the capitol if you have connections.—Belarus

There is absolute mistrust among the general population in the quality of care provided by the health system.—Moldova

Participants desired greater transparency in communication and collaboration with ministries of health and sought more involvement from policymakers.

As we implement population-wide CBE screening, we see the problems in communication from primary care providers, we see resistance from financing mechanisms, we see lack of understanding from politicians who are focused on quick dividends.—Moldova

Our target is the Ministry of Health, which decides what resources are allocated to our patients. If there was more productive and open dialogue with the Ministry of Health where we receive feedback and if we suggest something, we are able to understand why our suggestion was not accepted.—Russia

Knowledge and Institutional Capacity as Facilitators of Impact

Collaboration with local ministries of health, familiarity with evidence-based strategies for improving cancer early detection and care, and needs assessments and program evaluations were crucial to successful programming.

In 2005, we started a population-wide mammography screening. We reached many people. We can see that 30% are tested every two years, 30% about every four years, though we have tied a pink ribbon around every tree. I have been in the Ministry of Health, I know how to work with patients, politicians, physicians, everyone.—Lithuania

We invite our regional partners, local NGOs that have been in existence for a long time, our program coordinators, our most active volunteers, breast cancer survivors, and the medical community. Together we hold different events, for example education events for patients, oncological surveillance. We are thinking where we are now, to get us on the same page and identify our goals and priorities, work plans.—Russia

Moldova has a Strategy of Healthcare Development until 2017, and cervical cancer and colorectal cancer screening programs are included. This is a classic example of successful advocacy at the Ministry of Health and Parliament.—Moldova

Some participants lacked access to evidence-based guidelines, but those who did saw great benefit.

A very important document for us was the Breast Health Global Initiative, where we saw what was possible for our level of resources. We have a country document that was helpful. We saw that the first step was teaching women self-breast exam, so we worked with family physicians to raise awareness. Second, for family physicians and nurses to be able to do clinical breast exams to detect breast cancer in symptomatic women.—Kyrgyzstan

Participants wondered how to best tailor successful programs from other countries to their setting.

Europe and the United States are ahead of CIS countries, so we are trying to replicate best practices and figure out how to apply these. You have to take into account financial resources, but also for each region we have different cancer incidence, its own financial resources, its own way the health care system is organized in terms of medical supplies and personnel.—Russia

Two oncologist-led organizations conducted program evaluations on the basis of indicators for breast cancer screening, and one conducted a needs assessment with the help of foreign cancer experts.

At the primary health center level, we have introduced two quality indicators for breast cancer and two for cervical cancer that we analyze every trimester. The information enables us to indicate to the medical facility if there is a need to build capacity.—Moldova

Survivors were more attuned to logistics of patient support, including volunteer burnout. Oncologists were more aware of early detection and treatment guidelines. International meetings and partnerships with international cancer organizations were invaluable to advancing advocacy efforts.

We found many friends at these summits. I have visited Poland, Lithuania, Georgia. We collaborate closely with Poland. This is not financial support but sharing experience. When you visit, you talk to people, listen to presentations, and inevitably take something for yourself, and see how this experience can be implemented into your work.—Ukraine

We were able to become part of Europa Donna, to learn about advocacy, to think about how Ministry of Health officials and politicians can be together with us. We sent them to an advocacy training and now we all speak the same language. We understood that we needed to do a detailed needs assessment; we met with European experts in breast cancer screening and treatment who helped.—Kyrgyzstan

Validation of Results and Feedback

Study results were presented to participants of the 8th WE CAN Summit in Kiev, Ukraine, in October 2017. Summit participants agreed that these were an accurate reflection of their experiences. The subsequent discussion centered on shifting from cancer screening to early detection of symptomatic disease and accessible treatment.

DISCUSSION

To our knowledge, our study is the first to describe the key themes in breast cancer advocacy in EECA. Persistent cancer stigma and lack of trust toward the public health system continue to hinder early detection efforts. Although greater involvement from country ministries of health and policymakers is needed to scale up early detection and access to novel treatments, many of the patient advocates in the region were more focused on patient support and still finding their footing in policy and health care advocacy. Trust “underpins the co-operation within health systems that is necessary to health production.”[28] To build partnerships, advocacy organizations need to demonstrate knowledge of evidence-based practices, reliability, and the ability to deliver as well as an honest and generous motive. The same expectations stand for clinicians, public health care systems, and policymakers, where trust can be built through demonstrating transparency, competence, and benevolence.

Local needs assessments that include breast cancer stage at diagnosis, factors affecting delays in and access to treatment, ability to evaluate existing early detection and treatment programs,[15,16] and access to existing early detection and treatment guidelines are essential to achieving the patient advocates’ priorities of expanding early detection, access to treatment, and patient support. Some participants sought additional technical support and education in these areas, and many wanted to know how to adapt successful programs from other countries to their setting. Breast cancer early detection and care resource-stratified guidelines are available,[29-34] as are descriptions of barriers to early cancer detection in some EECA countries[7-13] and cancer advocacy resources,[35] but much of this literature was not accessible to many study participants as it published in English and in journals that require a paid subscription. In the setting of limited information, advocates valued opportunities to share experiences among like-minded organizations in the region and partner with international cancer organizations that provided relevant technical training and support.

Compared with EECA, where each country has one recently established breast cancer CSO (Table 2), each country in Western Europe has multiple long-standing breast cancer CSOs. Regional patient-advocacy–focused Europa Donna promoted dissemination of accurate information about breast cancer early detection and screening, multidisciplinary care including supportive care, access to clinical trials and second opinions, and advancing cancer research. It provided some study participants with advocacy training and technical support.[36] The European Society of Breast Cancer Specialists advocates for research into novel breast cancer treatments, fosters collaboration between scientists and clinicians, advocates for more breast cancer specialty training programs, and defines standards of high-quality breast cancer care.[37] Creation of similar infrastructure in EECA will require time; greater incentives for creation of a formal network of breast cancer CSOs that could work toward unified standards for breast cancer care and lobby for policy change; and more collaborative breast cancer data collection, early detection, and care projects between breast cancer CSOs, ministries of health, and policymakers leading to greater recognition and support of breast cancer CSO priorities.

A summary of recommended interventions to support breast cancer advocacy and improve cancer care in the region on the basis of our results is provided in Table 3.

TABLE 3

Recommendations to Improve Breast Cancer Advocacy and Cancer Care in EECA

Our studies in East and Southern Africa and the Andean region similarly found that lingering cancer-related stigma, lack of access to evidence-based information, and lack of trust hindered advocacy efforts, whereas sharing experiences among advocates generated ideas to overcome common obstacles.[35,38] Cancer CSOs in South America faced similar challenges, including limited availability of information about early detection, treatment, and program evaluation and a focus on patient support at the expense of policy change because of gaps in the health care system.[24] Compared with EECA, participants from East and Southern Africa focused more on how to make diagnosis and treatment more affordable, in part because of lower resources in the region, and proposed specific early detection interventions and initiatives to lower cancer care cost, in part because of having access to country-specific needs assessments that outlined these challenges and possible solutions.[35]

This study has some limitations. Our findings may not represent views of all patient advocates in the region or those of policymakers since there were only three in attendance. A plurality of conference participants was from Romania at the original conference, whereas a plurality at the second conference was from Ukraine. Because there was code saturation[39] and sufficient cross-validation, the results are appropriately valid providing valuable insights into breast cancer advocacy in EECA.

In conclusion, survivors, patient advocates, and oncologists in EECA, through their respective expertise in patient needs and gaps in the health care system, are uniquely positioned to work together to lifting lingering cancer stigma, increase trust in public health systems to facilitate early detection, and work to achieve greater engagement from policymakers and scale up access to treatment. International cancer organizations can help empower advocates through encouraging formation of formal networks and collaborations to leverage limited resources and increase impact, raising awareness among policymakers and ministries of health about the centrality of the patient voice and advocacy in improving cancer outcomes and encouraging them to collect data related to breast cancer outcomes to focus advocacy efforts, making available evidence-based breast cancer care guidelines, and providing training and technical assistance to facilitate needs assessments and program evaluation to translate existing guidelines and successful programs to the local setting and resources.