hard-to-reach abc/mbc communities toolkit

hard-to-reach abc/mbc communities toolkit

To address the critical unmet need in access to care for hard-to-reach populations with advanced/metastatic breast cancer (ABC/MBC), the ABC Global Alliance and Pfizer have collaborated to develop a toolkit of relevant, community-based initiatives and best practice summary documents that aims to drive collaboration across the global ABC/MBC community.

Following the successful launch of the toolkit, an additional 15 initiatives have now been added to further address the unmet need for these hard-to-reach populations.

INITIATIVE REPOSITORY

The Initiative Repository contains information on all initiatives included in the toolkit. It also includes the contact details of initiative owners, and allows users to filter using different criteria to find those that are most relevant. One-page summaries of each initiative can be accessed directly from the updated repository. Click below to access the latest repository and consider contacting initiative owners for more information.
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Initiative Repository

Initiatives are grouped into four categories, with each containing one-page summaries of every initiative included in the category, as well as a best practice document that incorporates learnings from all the initiatives in the category. The best practices outlined in these documents have been collated through a combination of written submissions and interviews with the creators of these initiatives.

The submission process for 2023 is closed now. We will inform you in due time about the selection process.

Educating Patients

Support for Patients

Peer-to-Peer Support

Raising Awareness

Educating Patients

Best practice in Educating Patients & HCPs About ABC/MBC

hilfe fur mich

Help For Me - Patient Navigator

In Germany, patients often lack the ability to navigate the complex healthcare system. This initiative supports patients with ABC/MBC and caregivers in navigating through the healthcare system thanks to a co-created, digital support solution which aims to ensure equity and access to health services. The website has since been expanded to include 9 other indications

ORCI

Unmet Need and Living with and Beyond Cancer in Africa

In Ghana and Tanzania there are a lack of support services for people living with and beyond BC. This initiative was developed to assess the unmet needs of women following primary BC treatment, and determine the feasibility of implementing a recovery package (holistic needs assessment, care plan and treatment summary) for these patients

Europadonna-Meme

Europa Donna Breast Health

Patients with ABC/MBC in Turkey lack access to validated medical content and social interaction with other patients. Following the success of the Let Hopes Blossom Initiative, Europa Donna and Pfizer Turkey collaborated again to create this Instagram page for patients with ABC/MBC, offering both medical content and opportunity to engage with other patients

Metastatic Care: Educational Component

Following the roll out of previous MILC initiatives, it was identified that many specific needs of patients with ABC/MBC were not being met. This standardised psychoeducational intervention was developed to assess and improve patient understanding of their disease, allowing them to actively participate in decision-making processes and ultimately improve quality of life (QoL)

Demonstration of a Scalable Breast Health Care Pathway: Experience from Botswana

Demonstration of a Scalable Breast Health Care Pathway: Experience from Botswana

It is estimated that 70% of BC cases are diagnosed late in Botswana and there are often delays to diagnosis and treatment. This initiative provides education on breast awareness and examination, as well as improving the patient journey from community to treatment by identifying delays, reducing the time at each stage, and improving quality of services

Foundations of Cancer Care

Foundations of Cancer Care

Opportunities for cancer nursing education in Africa are limited and in Ghana and Tanzania there is a lack of specialist cancer care and knowledge among nurses. This one-year initiative aimed to identify current levels of competence and then develop a culturally sensitive training programme for nurses in practice and peer support advocates delivering cancer care

Factors Influencing Treatment Decision Making in West African Women Diagnosed with BC Living in London

Factors Influencing Treatment Decision Making in West African Women Diagnosed with BC Living in London

Young black women in the UK have significantly poorer BC outcomes compared with average and there is a lack of understanding of the factors influencing decision making in West African women living in the UK. This ethnographic study was conducted to enable HCPs to better understand these women’s beliefs & behaviours and adjust their own approach accordingly

Patient Navigation Program

Low numbers of oncologists in Nigeria means that consultations are often rushed and patients are left not fully understanding their diagnosis and treatment options, and with emotional and psychological challenges. This initiative established a patient navigation protocol for HCPs and a unit in the UNTH oncology centre providing support and education for cancer patients

Spanish-language BC Patient Education Novelas

Spanish-language BC Patient Education Novelas

The lack of available material in Spanish-language on ABC/MBC is a barrier to access for LatinX patients, making discussions with HCPs complex. An original graphic novel was developed on the diagnostic journey of an MBC patient. Following this novela’s success this initiative is creating a sequel focused on the importance of genetic testing and hereditary cancer

Dandelion Toolkit

For people newly-diagnosed with ABC/MBC, concepts discussed with HCPs can be complex and difficult to understand. The Dandelion Toolkit aims to improve communication between patients and HCPs through visuals to help guide discussions on diagnosis, pathology, staging, treatment options, and QoL tools

ABC Project

ABC Project

While there are many BC support groups in Japan, most are not for people with ABC/MBC and many people with advanced disease have difficulties finding information online. The ABC Project aims to educate and empower people with ABC/MBC, their families, and HCPs, through online seminars, e-learnings, and episodes

mBC dictionary

mBC dictionary

The dictionary aims to improve communication between HCPs and newly diagnosed patients and their loved ones. The objective of the dictionary is to explain and provide greater context to the unfamiliar key terms and phrases that are commonly used when talking about ABC/MBC diagnosis, treatments and the experience of living with MBC

TOP: Treatment Optimisation Program in Breast Cancer

TOP: Treatment Optimisation Program in Breast Cancer

In Egypt, HCP and patient understanding of breast cancer is generally low. This initiative aims to improve public and patient understanding of the disease, as well as improving oncologist capabilities, through monthly MDT meetings and a series of online courses, enabling more breast cancer patients to receive appropriate treatment (per ESMO/ASCO guidelines)

Support for patients

Best practice in Support for Patients with ABC/MBC

Mobile App: My Alma Hellenic Association of Women with Breast Cancer "ALMA ZOIS"

Mobile App: My Alma Hellenic Association of Women with Breast Cancer "ALMA ZOIS"

In Greece there is a lack of support specifically tailored to the needs of patients with ABC/MBC, meaning patients often feel isolated and ashamed. The My Alma app was developed to support patients with ABC/MBC in an easily accessible, friendly, hopeful and realistic manner, bridging the gap between support services and these patients and ultimately improving QoL.

Let the Hopes Blossom

Despite evidence suggesting QoL is a crucial factor impacting prognosis, in Turkey there is a lack of psychosocial support for patients with ABC/MBC. This multi-organisation collaborative initiative was developed to provide psychological support for patients with ABC/MBC, as well as raising awareness about the importance of psychological support for these patients.

My Choice Navi

My Choice Navi

Patients with ABC/MBC in Japan are often poorly educated on their disease and lack support throughout their treatment. The MY CHOICE Navi account was developed on the Japanese social networking app, LINE, to provide patients with easy access to relevant information on ABC/MBC, as well as supporting treatment continuation via a hospital visit tracker.

Palliative Care and Home Visit for Rural Cameroonian Patients with ABC

In rural areas of Cameroon, 90% of patients with ABC/MBC live without treatment and breast cancer is often discovered at a very advanced stage due to lack of awareness. This initiative organises home visits and psychosocial support for patients with ABC/MBC, as well as training for traditional healers, HCPs and members of the community in breast health.

Support for Those Living with Incurable BC

SUPPORT FOR THOSE LIVING WITH INCURABLE BC

There is a lack of support for patients with ABC/MBC in New Zealand and life expectancy is low for these patients. This initiative offers a holistic programme of social, psychological, emotional, practical, and financial support to enable patients with ABC/MBC to live as well and as long as possible.

Winter Mission

WINTER MISSION

Women living in isolated and remote Greek islands encounter social and economic barriers that prevent them assessing breast cancer prevention services. This initiative brings these services to the remote locations, as well as offering medical services and informative lectures specifically for patients living with ABC/MBC.

REUSABLE WOUND KITS FOR MALIGNANT FUNGATING BREAST WOUNDS (MFBW)

Women with malignant fungating breast wounds (MFBW) experience limited healthcare support in Timor Leste. This initiative saw a team of Australian volunteer nurses travel to Timor Leste to provide patients with reusable wound care kits, as well as educational support to allow women to self-manage MFBW, maintaining their dignity and subsequently improving QoL.

Meeting Patients Needs to Improve Physical Self-image and Psychological Wellbeing

MEETING PATIENTS NEEDS TO IMPROVE PHYSICAL SELF-IMAGE AND PSYCHOLOGICAL WELLBEING

Patients receiving treatment for BC in Albania lack access to resources such as silicone prostheses and wigs, which negatively impacts the quality of life of these patients. This initiative aims to improve the self-image and psychological wellbeing of patients with BC through the provision of both wigs and silicone prosthesis.

HOPE Retreat

HOPE RETREAT

In the US, many single mothers with MBC are below the federal poverty level. This initiative provides financial and emotional support to these women and their children through a series of one-day retreats, including speaking with licensed social workers and therapists, art therapy, breakfast & lunch, and a grocery card to take away.

BREAST CANCER NAVIGATION & PALLIATIVE PROGRAM (BCNPP)

In Nigeria, there is stigma and misunderstanding associated with breast cancer, and many patients do not receive adequate support. The BCNPP is a cancer care programme designed to educate cancer survivors and caregivers across Nigeria to become professional patient navigators who can guide women with ABC/MBC.

GUIDING QUESTIONS FOR CANCER PATIENTS

Many people with cancer in Colombia have low health literacy and interactions with medical professionals can be challenging. This practical guide provides questions for people with cancer to ask their healthcare professionals throughout the patient journey. It is hosted on the Salud Me Mueve website and was disseminated via a social media campaign.

HOW TO IMPROVE THE INFORMED CONSENT (IC) PROCESS AND UNDERSTANDING USING 3D FILM OR CARTOON MATERIAL

Informed consent (IC) forms for clinical trials are often long, complex and technical in nature, which can be a barrier to patient enrolment, particularly for poorly educated and older patients. This initiative seeks to improve understanding of the IC process through 3D film or cartoon material, in order to improve access to trials for all patients.

SATORI (II) - SELF CARE AND WELLNESS FOR PATIENTS

The SATORI (II) initiative is a holistic wellness programme for women who have undergone breast cancer recurrence. The programme provides the training and tools necessary to allow patients to care for themselves in their own home, which otherwise could not be done due to a lack of affordable and accessible services.

Digitally EmpoweredTM

DIGITALLY EMPOWERED^TM

It can be difficult for newly diagnosed cancer patients to navigate the wealth of information online. Digitally Empowered^TM is an online course aiming to provide patients with knowledge and tools to find credible information about their disease, empowering them to make informed decisions about their treatment, through a series of easy-to-follow video modules.

Frankly Speaking about Cancer

FRANKLY SPEAKING ABOUT CANCER

There is a lack of clear, accessible information regarding ABC/MBC treatment options in the US. This initiative consists of a series of information booklets aiming to inform and help guide cancer patients and caregivers, including two booklets specifically for people with ABC/MBC.

Peer-to-Peer Support

Best practice in Peer-to-Peer Support Groups or Platforms for Patients with ABC/MBC

Through My Eyes Facebook Page

Through My Eyes Facebook Page

While there is a lot of information on breast cancer in Asia, there is a lack of specific information and support for patients with ABC/MBC. This Facebook page provides a community specifically for patients with ABC/MBC, including reliable, specific information on their disease, sharing of patient stories, and links to patient organisations with relevant content

The HOPE (Helping Others through Personal Experience) Project

The HOPE (Helping Others through Personal Experience) Project

In Ghana there is a lack of counselling available for patients with ABC/MBC and patients are often led to believe that it is not possible to maintain QoL while living with ABC/MBC. This initiative trains patients to become peer-to-peer counsellors, to help demystify BC and provide advice to patients with newly diagnosed BC or ABC/MBC

Discussion groups for people with ABC/mBC

Discussion groups for people with ABC/mBC

Patients with ABC/MBC in the Netherlands have limited access to psychological support and there is a lack of willingness to mix with patients with BC. This initiative organises accessible, monthly discussion groups specifically for patients with ABC/MBC, led by trained cancer coaches, allowing patients to connect, learn from each other and ultimately improve their QoL

Patient Empowerment Workshop – We are ConnectedThe Lebanese Breast Cancer Foundation

Patient Empowerment Workshop – We are ConnectedThe Lebanese Breast Cancer Foundation

Patients with ABC/MBC in the Netherlands have limited access to psychological support and there is a lack of willingness to mix with In Lebanon, support for women with ABC/MBC is unequal to that for with patients with eBC. This annual workshop was created to integrate ABC/MBC into awareness efforts for BC, and to connect, empower and inspire patients with ABC/MBC through educational sessions from specialists in nutrition, sexology, psychology, oncology, meditation and beauty

Malaika (Angel Program)

Malaika (Angel Program)

In Uganda there is limited psychosocial support for patients with ABC/MBC and patients often struggle financially and with nutrition. This initiative trains patients with ABC/MBC and their families on ways of improving their nutrition and income, as well as providing access to psychosocial support services and community palliative care.

Abuja Breast Cancer-Support Group (ABC-SG)

Abuja Breast Cancer-Support Group (ABC-SG)

In Nigeria, there is stigma and misunderstanding associated with breast cancer, and many patients do not receive adequate support. This initiative connects people impacted by breast cancer in Nigeria to support, educate and empower them, through patient navigators, telephone support, monthly support groups, financial support, and educational materials.

Raising Awareness

Best practice in Raising Awareness & Promoting Earlier Diagnosis

ABC INFOGRAPHICS

ABC INFOGRAPHICS

Following breast cancer diagnosis, many patients are unaware of advanced/metastatic disease and the symptoms to look out for. This initiative comprises two infographics showing simple-to-understand, red-flag symptoms for both ductal and lobular ABC/MBC, and is intended for use with patients and as an educational tool for HCP training.

Care-A-Van Breast Cancer Project

Care-A-Van Breast Cancer Project

In Malaysia, there are multiple barriers to early diagnosis and treatment of BC, and outreach projects often work in silos and are restricted to big cities. This collaborative, multi-organisation initiative aims to increase early BC diagnosis in urban poor communities, as well as provide information, support and care specifically for patients with ABC/MBC.

The “Cima Model”, Understanding, Training and Acting: An Experiential Practice Towards Early Cancer Detection

The “Cima Model”, Understanding, Training and Acting: An Experiential Practice Towards Early Cancer Detection

People living in marginalised areas of Mexico are often diagnosed with late-stage breast cancer due to limited information on the risks of BC and early detection methods. This initiative aims to train a network of health promoters to raise awareness of BC and lower the number of diagnoses at advanced/metastatic stage, as well as improving QoL for those diagnosed

Community Outreach Programme

Community Outreach Programme

Women in Ghana, especially those in villages and deprived communities, have low awareness of BC and often do not have easy access to early detection methods. This initiative aims to reduce the rate of late-stage BC diagnosis by travelling to these communities to offer education, breast examination, advice and support (including for patients with ABC/MBC).

Community-Based Women's Cancer Awareness

Community-Based Women's Cancer Awareness

Communities in Haiti have low awareness of BC and often do not engage with cancer care services until the disease is at a very advanced stage. This research-led initiative aims to raise BC awareness through a multimedia campaign, designed in Creole, including pamphlets, videos, t-shirts, and wallets for the public and a training manual for HCPs.

Male Breast Cancer Global Alliance

Globally, there is low awareness and stigma around male BC and male mortality rates are rising steadily. This organisation advocates to change the BC conversation and provide men with the same access to research, clinical trials and drugs as their female counterparts. As part of their work they have developed breast self exam cards specifically for males.

Treat Me Well

Patients with BC in Brazil often face delays in diagnosis and starting treatment, and are unaware of their rights to care. The annual awareness campaign during ‘Pink October’ has been created by FEMAMA with the aim to change public policy – empowering patients, informing them on their rights and the possibilities of better access to care in Brazil.

Givemetime.now

Givemetime.now

This multi-channel awareness campaign has been created to highlight the unequal uptake of CDK4/6 inhibitors across Sweden despite there being a national recommendation to use them within their label. The campaign consists of a film and web-page which will be promoted via digital and traditional channels to raise awareness and help increase the uptake of CDK4/6 inhibitors.

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