Join Us! Everyone is welcome. No experience needed- just a desire to raise your voice for change.

Consumer Health Equity Advisory Group

Coming together to drive the agenda for meaningful change

Honoring Choices MA consumer healthcare equity group 1

Health care is a public trust. It does not work well if it's not trustworthy, fair and accessible.

The Covid-19 pandemic shined a bright light on the inequities rooted in racism, bias, discrimination and the health related social needs that create barriers to accessing local affordable quality care. These long standing inequities can limit a person's civil right to make informed care choices, and severely impact a person's health.

Even today, "What works best for you?" is rarely a question consumers are asked to fix current problems or to design more inclusive programs. 

To address the inequities and build a true person-centered health system, care providers must first listen carefully to consumers to understand the everyday challenges and barriers they face in getting good care.  Together consumers and care providers can start to reframe the issues to effectively dismantle the barriers and open up trusted pathways to help all adults take control of their health care to stay healthy and access care in their community.

The Consumer Health Equity  Advisory Group brings together a diverse and inclusive group of consumers, consumer groups and community advocates to-

  1. Identify the pressing issues and roadblocks consumers face in getting good care;
  2. Re-focus issues from consumer knowledge and set achievable goals;
  3. Take action to improve health outcomes and drive the agenda to make meaningful change.

Re-Focus Issues. Take Action!

acknowledge bias

Empower Consumers

· Know your rights, get the facts

· Open dialogue to affirm unique issues

· Identify common ground for systems change

· Value your knowledge & lived experiences

· Capture consumer feedback & data to flex an inclusive consumer muscle

 

 

Be anti-racist

Reframe Issues. Remove Barriers.

· Build a trustworthy person-directed, consumer driven health system

·  View diversity as a power; language as an asset

· Address root causes of racism & discrimination

·  Create solutions for health-related social needs

· Identify inequities: who gets care; what's paid for?

 

 

 

MOLST form users

Improve Health Outcomes

· Use consumer data to drive change and design new programs

· Tools to take control of your health care

·  Create innovative pathways to access care

·  Work in partnership with care providers for equitable, affordable, accessible care

All issues are on the table. We'll find a few common threads to set achievable goals on several issues to start, and work with other groups to support our shared mission.

Here are some of the common issues consumers have started to talk about:

1.  Covid-19 Vaccine Equity & Social Needs 

  • We'll discuss immediate and long term needs  and take action to eliminate inequities-
    • Is the vaccine getting to disproportionally impacted Black and Latinx residents, high risk  and home bound consumers?
    • Is a trusted community response needed?  Learn more about Vaccine Equity Now!
    • Create multilingual documents and work together on health-related social needs (Housing, Food, Transportation, Immigration, Mental Health etc. (see Resources below)

2. Let's Talk about Racism, Bias, Discrimination

  •  Consumers will discuss the hard truths and roots causes of structural racism and continued everyday experiences. We'll assemble information & tools-
    •  For Consumers:  Multi-lingual &  culturally competent information; what to do when faced with racism and bias.
    •  For Care Providers. Work with others groups to develop statewide implicit basis education inclusive of the consumer experience.

3. Know and Honor My Care Choices

  • It's Your Health Care and Your Choice!  Let's help each other take control of our health care choices. We'll take action to improve language access to make a health care plan, and ensure care providers have the tools to engage adults in clinically & culturally competent planning conversations. Get Started with-
    • Who's Your Agent?  Choose a trusted person in a Health Care Proxy. Do-it-yourself! Link 
    • ¿Quién es su Apoderado? Health Care Proxy in Spanish. Also free, downloadable documents in Portuguese, Vietnamese, Russian, Chinese, Haitian-Creole, Albanian, Arabic, Khmer. Link
    • TAKE ACTION:  New POLST Program. POLST is a medical form where a clinician and a seriously ill & frail patient talk about the patient's medical condition and treatments options. The patient chooses the care she/he wants and the clinician writes it down in a POLST form, which is honored across all care settings. The POLST form can protect against bias and ensure your choices are honored.  Now's the time to let the state know what consumers need to build in a trusted, equitable program.

4.  Unstable Housing, Lack of Medications, Food Insecurity and All Things that Impact My Health

  • Health related social needs or social determinants of health can severally impact your health.
    • We'll talk with experts to update us on what's being done and flex our consumer muscle to help make changes in our communities.

What's on your mind? Come join us and share your specific concerns about inequities where you or your family live, work and receive care.

Everyone is welcome. Contact Ellen at 781 642-0454, or send an email to Ellen at edipaola@honoringchoicesmass

 

Raise Your Voice

Come Join Us!

  • Individual consumers, consumer or patient groups and community advocates are very welcome —
    • Adults of all ages, races, cultures, genders, abilities and disabilities, family members, caregivers , anywhere you live, work and receive care.
    • Multi-lingual and bi-lingual consumers. Help us to use language as an asset, not a barrier.
    • Community advocates, health equity and  consumer groups. Let's build on your progress and promote your work.
  • No experience needed. Just a desire to make change.
  • We will meet via zoom and phone calls.
    • We'll bring in guest speakers to learn from health equity experts, and choose common issues to set a few achievable goals.
    • With the help of health equity and community groups, we'll distribute quick surveys on the common issues and goals to strengthen our voice.
  • Easy to Join. Everyone is welcome. Contact Ellen at 781 642-0454, or send an email to Ellen at edipaola@honoringchoicesmass

Resources

There are many groups working on health equity and eliminating the barriers to getting good care. Here's some information and resources for consumers and care providers. 

Let's work together. Do you have information and tools to share?  Let's strengthen our shared mission. We'll post your work here. Email to Ellen, edipaola@honoringchoicesmass.com

COVID-19 Digital Digest for MA and RI

MLPB, an Honoring Choices Alliance Partner, believes in the power of justice to advance health. Their Digital Digest is an impressive resource for MA & RI care teams who want to be more effective social need problem-solving partners with the people they serve. "The Digital Digest covers 10+ domains of health-related social needs (e.g., Housing, Food, Transportation, Immigration, Mental Health etc.)," says Samantha Morton, CEO, "with attention to key changes and what they mean for successful problem-solving."  View this unique, comprehensive resource here

Vaccine Equity Now!

Historical and contemporary experiences of racism and discrimination have led to higher levels of earned distrust in Black, Latinx, immigrant, and low income communities, and among people who are incarcerated. Vaccine Equity NOW! Coalition demands that Governor Baker take immediate action to prioritize access to the vaccine for the communities. Funds should be immediately dedicated to trusted community organizations to engage residents, provide accurate information, and address concerns. These organizations have trusting relationships and know how to reach and effectively engage residents.  Read more here

The petition can be found at: https://docs.google.com/forms/d/e/1FAIpQLSfxHq69D_Z2uTzZlNgpHtoqpoHWd-grjg3P_GnsyqZPonAQwA/viewform.

Become Antiracist. Acknowledge Bias.

Learn more about your personal journey to commit to being antiracist in all parts of your life, and making unbiased choices. Here are  great resources from the National Museum of African American History and Culture to explore:

Talking About Race

Video: How to be An Antiracist, by Ibram X. Kendi

Video: How To Overcome Your Bias, by Verna Myers

Who's Your Agent?   Make your own health care plan.  

3 steps of Whos Your Agent program
Every competent adult, 18yrs/older, can make a plan. You can do-it-yourself with the Getting Started Tool Kit. Help your family, friends and neighbors.

Start by choosing a Health Care Agent. Your Agent has the power to make health care decisions for you if you are unable to make decisions yourself. Your Agent can get you the care you need, even for a short while you recover. Be sure to mail or fax a copy of your completed documents to your Agent and primary care physician.

The Getting Started Tool Kit makes planning as easy as 1-2-3:

  1. Who's Your Agent?  Appoint a trusted person as your Health Care Agent in a MA Health Care Proxy.  No Agent? No Problem- start with Step 2;
  2. What Matters Most?  Write down your instructions for care in a MA Personal Directive (Living Will);
  3. Let's Talk About My Care. Talk with your clinicians, using the 5 Things to Talk About discussion guide, to get good care everyday.

Download a free The Getting Started Tool Kit

Download Translated Health Care Proxy & Personal Directive

¿Quién es su Apoderado? 

Choosing a Health Care Agent in a Health Care Proxy has never been more important to protect your right to get the care you want.  You can download free, translated documents in Spanish and other languages.  Bi-lingual care providers can offer culturally sensitive conversations and help adults translate their choices onto the English document. Both documents are valid and can be placed in the adult's electronic medical record so care providers know how to contact your Health Care Agent.

Here is a Health Care Proxy in 9 languages:

Español –  Spanish

Português –  Portuguese

Tiếng Việt –  Vietnamese

Kreyòl Ayisyen –  Haitian Creole

Русский –  Russian

繁體中文 –  Traditional Chinese

عربي –   Arabic

ភាសាខ្មែរ –  Khmer

Shqip -  Albanian

AlzHereForYou and 24/7 Helpline - Great resources from the Alzheimer's Association

 Alzheimer's Association logoIt's been a challenging time for individuals with Alzheimer's Disease and other dementias, and their family members and caregivers. Community health care professionals are working hard to help support all during the COVID-19 pandemic, made more difficult  by the loss of access to resources and closure of day programs.

Have a question or need help finding a resource?    Click on this link, AlzHereForYou to view a wide range of helpful resources. And be sure to call the 24/7 Helpline: 800.272.3900. Trained staff are there to help individuals, family members and caregivers, and also health care providers and community professionals find appropriate care and services.

24/7 Helpline: 800.272.3900

Talking about Dementia And Culture

Dementia Friends of MA recently hosted a Let’s Talk About Dementia and Culture: How We Talk and Teach About Dementia in Cultural and Linguistic Communities webinar. It was a far-reaching and timely discussion of disparities in the risk of developing dementia, and how we can learn from the values and wisdom of many cultural traditions.

You can access recording and multi-lingual tools here. 

 For more information, Contact Beth Soltzberg, Dementia Friends MA  at bsoltzberg@jfcsboston.org

Share A Meal: Community Food Banks

During this public health emergency,  adults in your town, city or community may not have a reliable healthy food source.  Here are some resources. Please call ahead to find our how each group is  distirubting food in your neighbohood.  For those who can, consider making a financial donation to your local food pantry or food bank.

  • State List of Local Food Banks. Link
  • The Greater Boston Food Bank. Link
  • Project Bread. Link
  • Boston Medical Center Food Bank. Link
  • The Greater Food Bank of Western MA. Link
  • Worcester County Food Bank. Link
  • Project Phoenix : A Food Hub Rises in Lynn. Greater Lynn Senior Services. Link.