Highlights from the 2014 Avon Forum

The Avon Forum was held on March 16-19 in Washington, DC. To review presentations from the forum or from breakout sessions you may have missed, click on one of the seven major Forum themes below.

  • The disparities between White and Black women breast cancer death rate began in the 1990's when for most women deaths attributed to breast cancer were declining. The studies below looks at some of the reasons attributed to these disparities.

    Racial Disparity in Breast Cancer Mortality: the 50 largest Cities over Twenty Years
    The disparities in breast cancer death between Black and White women were addressed by Dr. Steve Whitman of Sinai Urban Health Institute, in a continuation of his presentation at our previous Avon Forum in 2012; he had expanded his study from 25 cities to 50. His findings were similar in all cities in that Black women died at a much higher rate than White women and three main factors attributed to the disparity – poverty, segregation and income inequality. To review his full article please click here.

    Assessing And Understanding the Root Causes of Breast Cancer Disparities in Memphis
    According to Dr. Whitman's finding the largest disparities in death rate between Black and White women is in Memphis and Dr. Ed Rafalski of Methodist Healthcare Le Bonheur in Memphis addressed the reasons why and what he was doing at his hospital system to improve the rates. Some of the issues addressed system and data collection issues that needed improvement. For more on the nature of some of the issues and the plans to improve; please read his full article here.

    Improving Health in an Urban Asian Population
    Dr. Susan Parsons, MRP of Tufts Medical Center addressed the issues faced by Asian populations in urban areas and how it impacts their ability to access and follow up with medical care. The presentation also looked at language and societal barriers that are faced by some Asian Populations.

    Strategies for Working with Undocumented Clients and Outreach to Latina Communities
    In a breakout session Fernando Ascencio of Avon BHOP Nueva Vida addressed the unique barriers faced by those that are undocumented and provided an overview of best practices to improve no show rate, medical adherence and community outreach to populations that may be hard to identify and may have trust issues. He noted that social media outreach needs to be tailored to generation being targeted – television may work best for older Spanish only speaking populations and text may work best for younger bilingual clients. And a best practice is to develop allies/community gatekeepers and key stakeholders within the community to provide credibility, rapport and community buy in. In a breakout session, Fernando Ascencio of Avon BHOP Nueva Vida addressed the unique barriers faced by those that are undocumented and provided an overview of best practices to improve no show rate, medical adherence and community outreach to populations that may be hard to identify and may have trust issues.
  • Those affected by metastatic breast cancer number about 1.6 million and they often feel isolated and alone in their battle. For these persons their cancer has spread to other organs or parts of their body and their battle is not searching for a cure but mitigation of cancer growth and finding the best quality of life. Because of this, they can feel alienated from other breast cancer patients who seek complete remission and the medical community that cannot "cure" this cancer. The three presenters below addressed the needs of those with Metastatic Breast cancer from the point of view of a patient, an advocate and a researcher.

    Unique Needs of Patients Living with Metastatic Breast Cancer
    Shirley Mertz, the Midwest coordinator for the national Metastatic Breast Cancer Network, provided a personal, moving and informative presentation about metastatic breast cancer and how the diagnosis can alienate patients from the majority of other breast cancer survivors and has limited treatment and research. About 155,000 women and men are living with Metastatic Breast cancer and 40,000 people die every year from Metastatic breast cancer but in 10 years we have only advanced the survival of persons diagnosed with Metastatic Breast cancer by one year. Surveys with patients noted that there is a critical need to feel part of a supportive system, clinical trials and research and patients did not feel the symptoms of the disease are adequately addressed such as pain and fatigue.

    The Role of Nurse Navigation for Metastatic Breast Cancer Patients
    Lillie Shockley, RN of Johns Hopkins and Metastatic Breast Survivorship presented information about how people live with this disease and end of life preparation and the need for supportive ancillary care and treatment. She also provided a moving video of their Metastatic breast cancer couples retreat; it showed how couples deal with this diagnosis and the likelihood that their partner will not survive. For more and to view the video link HERE 

    Early Phase Clinical Trials in Patients with Advanced Disease
    Dr. Pamela Munster addressed the unique and often difficult position women with Metastatic breast cancer find themselves when looking for clinical trials to join. From 1900 -2000 there have been 5 new agents developed to treat Metastatic breast Cancer. Since 2013, there are now 862 Phase I studies and 1300 new Phase II studies for Metastatic breast cancer drugs and 6 new drugs that have been approved by the FDA. She noted that often clinical trials require that the person not have tried the standard drugs and how this complicates getting persons with Metastatic breast cancer qualified for trials. There needs to be better strategies to determine resistance, more therapies and more clinical trials.
  • Patient navigation has long been seen as a best practice to outreach to patients that may be hard to reach or have additional barriers that impact their ability to access and adhere to medical care. The forum looked at objective methods to evaluate and prioritize outreach, what issues are faced by Patient navigators, how to best integrate patient navigation into medical health services and how to develop Patient Navigators.

    Metrics for Systematically Evaluating Community Based Outreach
    Bijou Hunt, MA of Sinai Urban Medical Institute developed an objective database that can assess Patient Navigation outreach and then allow agencies to prioritize where they want to allocate resources. By looking at the number of attendees and how that translates to mammograms an agency can determine where and how they want to allocate their limited resources. For a link to the article and the database please click here. 

    Key Issues Facing Patient Navigators and Community Health Workers: A Panel Discussion
    A panel of three Avon BHOP staff that perform Patient Navigation (Joanne Stroud- LeBeau, YWCA of SE Massachusetts, Joyce Dolbec – YWCA of Rhode Island and Natasha Riley – Vista Community Health – CA) and staff from Tufts Medical (Sabrina Karim and Susan Parsons) addressed some of the key issues that are faced by Patient Navigators. Some issues that were noted were the need to for screening sites to look at all women and to look at women in the context of their lives and the barriers they face. This included needing sites that can provide translation services and address transportation and financial needs but also be able to see women with disabilities and women with mental health issues. Others mentioned meeting the patients were they are in their lives and tailoring your services to meet those needs and facilitate their screenings. For Sabrina Karim's presentation please click here.

    How to Approach Integrative Patient Navigation: When Patients Choose Integrative Care
    The presenter, Luana Halpern of You Can Thrive!, spoke about self care ideas for breast cancer reduction, everything from organic and local grown produce to avoiding those plastic water bottles! Using scents from essentials oils participants were taught how to alleviate nausea and invigorate energy. Lastly, we were taken through a holistic approach for stress reduction called Tapping. This technique works by tapping lightly with your fingers on specific pressure points on your body. A DVD was provided for reference. For more on these techniques, please click here. 

    Patient Navigation Workforce Development
    Anne Willis, MA provided a description of George Washington University's standardized Patient Navigator Program. Since there is no formal, accredited or standard PT Navigator program around the country, they are trying to develop one with Core Competencies and skills. The program would be a toolkit with an online portion. It's in the early stages. They are developing an effort to have some sort of standard for PT Navigators. For more about this, please click here.
  • Early Impact of ACA on Breast Cancer Screening and Treatment
    Keysha Brooks – Coley, Director of Federal Relations, ACS- Cancer Action Network provided an overview of some of the changes that the implementation of the Affordable Care Act has and the need for physicians and care givers to address Palliative care for those living with breast cancer. She also mentioned the need for services for those that would not be covered by the ACA. For the entire presentation, please clock here. 

    A Prospective Surveillance Model for Physical Rehabilitation for women with Breast Cancer
    The study by Dr. Sheryl Gabram- Mendola, MBA, FACS, Jill Binkley, PT, MSc, CLT, FAAOMPT and Winifred Wilkins Thompson, PhD, MSW from Emory University Winship Cancer Institute looked at identifying all of the factors that impact health such as psychosocial and spiritual needs as well as biomedical issues that impact patients. The study determined using lay Patient Navigators for community and individual education and social support to look at increased adherence to physical rehabilitation and exercise and its demonstrated positive impact on reducing lymphedema, treatment symptoms and overall feelings of wellness. For to see the entire presentation, please click here. 

    Fitness and Nutrition tips for you
    The presenters Zionna Munoz and Erica Worden from Mammograms in Action provided an overview of the Mammograms in Action Program and its partnership with the Avon Foundation. They offered some basic nutrition tips and resources and then led the group in some core-building exercises!

    High Risk Clinics for Underserved Populations
    Christina Seelaus, MS of John Stroger Hospital reviewed the importance of genetic testing for patients that are diagnosed with cancer very young or with a known familial history of breast cancer, not only for the education and peace of mind for clients and their possibly affected family members as well as being able to determine the type of cancer that is affecting the patient. For a look at the presentation, please click here.
  • When a person is diagnosed with cancer the dynamics of life and routine are completely disrupted with personal and family life surrounding the treatment and support of that person but the physical and emotional needs of the care givers are relegated to a secondary role. The presenters addressed the critical importance of supporting the care giver on a practical level but also allowing them to process their fears and grief.

    Support for the Caregiver
    Lori A. Williams, RN, PhD presented information on her study of the factors that impact the successful ability to meet the needs of caregivers that included four primary issues Commitment, Expectation Management, Self Care Role Negotiation, and the Story or narrative they tell themselves. For more about her study and conclusions, please click here. 

    Care for the Caregiver: Taking Care of Our Clients but not forgetting about Ourselves
    Melanie Steilen, RN, BSN ACRN provided information targeted at the professional care givers and spoke about the physical, mental and emotional affects of chronic long term stress and how to find ways to alleviate and mitigate the damage it can cause.

  • The need for more clinical trials and increased participation was noted throughout the Forum, including the presentation given by Dr. Pamela Munster that is listed above in the Metastatic Breast Cancer; the presenters noted that there needs to be more clinical trials that address the various types of breast cancer (Luminal A or B, HER2 and Triple Negative etc) and more diverse women included in clinical trials.

    Breast Density and Breast Cancer Risk: What We Know and What We Don't
    Dr. Sarah Nyate of the National Cancer Institute provided background information about Dr, John Wolfe's discovery of breast density and its relationship tp breast cancer risk. She provided information about the factors associated with dense breast and changes in breast tissue over time that affect breast density. For her presentation please click here.

    Neo –adjuvant (Pre-Surgery) Medicines for Early Stage Breast Cancer
    Dr. Susan Boolbol, FACS the Chief, Division of Breast Surgery at Mount Sinai Beth Israel Associate Professor of Surgery of Albert Einstein College of Medicine presented her findings about the best use of Neo –adjuvant or presurgery medicines for early stage breast cancer and with what types of cancer (Luminal A or B, HER2 and Triple Negative etc) does this work best. Neo-adjuvant treatment was originally introduced in 1980s to improve the long term outcome of systematic treatment. There hope is to get complete pathologic response which has been defined as no cancer in breast cancer or in nodes. The presenter described the findings of several different trials.
  • Social Media and Best Practices and Evaluation
    Marc Hurlbert, Ph.D presented information on how best to use Social media to outreach. The presentation noted that agencies first need to look at what already exists, why you are outreaching ( ie, educating promoting, increasing donations and branding) how you will outreach ( what channels you will use ) who will monitor and own the content in your organization and when information will be updated and/or changed. For the presentation please click here.

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