Washington State Health Advocacy Association (WASHAA)
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Paying Attention in Life Pays Off!

2/4/2019

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Paying Attention in Life Pays Off!
Author:
 Robin L Shapiro © 2019


Paying Attention: 5 Tips for Better Health

I love to walk.  Although a bad foot has been preventing me from logging my usual 20+ miles per week, today I was blessedly able to do a ‘5-miler.’  I typically use my walk time to call my Mom, sister or far-away friends. Sometimes I listen to the radio (typically NPR) or a book on Audible.  Needless to say I am not always paying super-close attention to my surroundings!

Today, after my phone conversation with Mom, I was walking my dogs Lucky and Butters through my Mt Baker/Leschi neighborhood and was startled to see this beautiful heart puddle on the pavement.  It took my breath away. But as I walked closer, the heart seemed to disappear. Was it a figment of my imagination? I went back to the spot to photograph it – to prove that it actually existed.  As I stepped in another direction, I noticed some cool reflections. It seemed that by moving slightly or looking at it differently, the heart puddle changed. Sometimes not looking like anything at all.  Hmmm…paying attention matters! The same is true in health advocacy.

How Paying Attention Pays Off

1/When navigating your health, Be Aware –your five senses can help you describe to your health care provider how you feel and what has happened to your body, whether you are at home, at the doctor’s office or in the hospital.  By telling your story, you will help your health care provider figure out what might be going on.

2/Bring someone with you who can also look and listen carefully.  A trusted support for you, another person might see or hear things differently.  S/he can listen deeply and take notes while you focus on healing or asking questions.  Another perspective can help you!
3/Examine your situation from multiple angles.  What you see or hear at first might not be your final impression about what you should do.  Take time to understand what it is you have to decide. Getting a second opinion is always a good idea!

4/Record what is happening – by keeping written notes, your medical history and current medical issues.  Keeping your medical records and a diary of symptoms over time in your medical journey can help your health care professional piece together what is happening to your health.  WASHAA has created a Personal Health Record and a Pain Diary to help you keep track.  If you would like either of these, please contact us at info@washaa.org.

5/Get involved in your health to know what you can do and what might come next. People who are active in their care have better health results and generally lower costs.

Want to learn more about health advocacy, how to become your own health advocate or an advocate for others?  Join our WASHAA community for free by signing up for our e-newsletter at: https://preview.tinyurl.com/WASHAAenews

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WASHAA 6th Annual Meeting is october 5th in Seattle! Join us for the "Conscious Living and Dying: Health Advocacy at End of Life" meeting!

9/2/2018

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Will we see you at our 6th Annual Meeting?  This year promises to be our best meeting yet, with the topic:  Conscious Living and Dying: Health Advocacy at End of Life. Check our full agenda here (or below), and be sure get your early bird discount (ends Tuesday, September 4th)! 

Register for the 6th Annual Meeting here: 
https://tinyurl.com/6thAnnualWASHAAMtg
 
Join the Washington State Health Advocacy Association (WASHAA) in Seattle, WA for its 6th Annual Meeting:
Conscious Living & Dying: Health Advocacy at the End of Life**, starting at 9 am - 3 pm, Friday, October 5, 2018 at the UW Center for Urban Horticulture in Seattle, WA. 

**This meeting is anticipated to be approved for 4.5 CEUs by BPCA, LSW, LMFT, LMHC, Care Managers, CNAs, HCA and Family Caregivers (additional fee of $25 applies for CEUs).
 
Also, don't forget to sign up for our Networking Meeting Sept 12 - Register today and we hope to see you there!
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Open Enrollment is Coming. Join the Conversation ON OCTOBER 23rd!

10/2/2017

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Visit Concerned about health insurance premium hikes for 2018? Shopping for a new plan? What if the plan will no longer be available in your county, or your doctor no longer participates in the insurer’s network? What happens when a patient is in the midst of complex treatment and insurance ends? When should you use a broker, exchange navigator or insurance advocate?
So many changes are happening with health insurance; more will come. Whether plans are directly purchased or obtained through a State-run exchange, it’s important to be aware of rules, deadlines and changes.  
​

Prepare for a complicated chapter with tips related to choosing, buying and navigating health insurance. We will be sharing expertise from Karen Vogel and Molly Lanzinger. Karen is a WASHAA member specializing in insurance-related advocacy and Molly is a licensed broker specializing in insurance consulting for small businesses, families and individuals. Drawing upon 5 decades of shared experience, information will be tailored to your interests and concerns.

Your thoughts are welcome! Advocates and the general public can send questions and comments to our online mailbox at info@washaa.org or submit questions via a Google Form. Inquiries will be incorporated into a WASHAA-sponsored presentation later this year. With Karen and Molly’s help, WASHAA will attempt to answer your questions to the best of our knowledge.

Visit us on Facebook at 2pm (PST) on October 23rd to see your questions answered LIVE! No question is too small or too big! We will do our best to answer!

SUBMIT A QuESTION

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Right to try-act

8/29/2017

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By Hartmut Stecher, PhD, MS
Principal Scientist at Cancer Treatment Navigator, Inc.
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​Patient access to investigational cancer drugs is governed by the FDA, via clinical trials and the compassionate use program. The new senate approved bill “Right to Try Act”, provides a third new avenue to patients to secure investigational drug. The pros and cons about the “Right to Try Act” are debated in this Medpage article.
Cancer Treatment Navigator (CTN) has intimate perspective on issues faced by cancer patients in accessing investigational therapies. Our personalized services identify treatments not yet considered for cancer patients diagnosed at any stage, after a complete review of their medical history and gene mutation profile. Often, these turn out to be drugs under study in clinical trials, and not available in clinics or hospital formularies. In our experience, patients continue to face difficulty in accessing these drugs because of factors such as physician opinion on when to keep trying and when to give up hope of improving a patient’s condition. Several hopeful patients that make informed choices on wanting to try an investigational therapy end up battling odds when their cancer care team, led by an Oncologist is unaligned on the benefit/risk profile of a drug that is in clinical trials, even though there is ample safety data to warrant its use.

One of the patients we served in the past had highly metastatic throat cancer. Scientific and clinical data supported that he might greatly benefit from a drug that is approved for a special form of lymphoma. This specific drug was “investigational” for metastatic throat cancer, yet had been on the market for lymphoma for almost a decade – with thousands of patients treated and a remarkable safety record. Yet, it was the Oncologist’s decision to refuse writing a prescription for this drug, citing concerns about the patient’s safety. The irony of this story was the fact that the Oncologist did sign the paperwork for “Death with Dignity”, but could not honor the wish of the patient to try one last “investigational” option with established safety before giving up.

This is one of the cases where CTN wholeheartedly supports a “Right to Try-Law”, with provisions to truly empower patients. We would have worked hard for this patient to secure insurance coverage for this investigational drug or work directly with the manufacturer to gain access to this medicine. Above all, the patient would have been willing to pay for a 2-month supply out of pocket – enough to assess if the drug is providing benefit – and still not too long that the patient and his family would have encountered financial hardship. The only “missing link” to gain access to this investigational drug was the signature of the Oncologist on the prescription. It should be the patient’s decision to try one more time, and not of one individual Oncologist. Oncologists play a pivotal role in providing proven therapies, but often do not have the bandwidth to research and assess numerous investigational drugs or get lost in paperwork and phone calls to try secure coverage of investigational drugs. In its current form, will the “Right to try Act” be able to make a difference? We believe there should be modifications on how to assess safety before it is passed into law, so that Oncologists have to define why they don’t accept an investigational drug’s safety, instead of a mere “yes” and “no” based on comfort level dictating a cancer patients right to try.
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WASHAA PRESS RELEASE -- National health & patient advocate survey 2016 results in!

1/30/2017

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WASHAA Press Release
Read the Full Survey Results
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CONTACT:
Robin Shapiro, WASHAA Chair
Phone: 206.979.8861 
 
​


​
Independent Health and Patient Advocates Continue to Earn Enough to Help Patients Survey Shows Advocate Satisfaction and Optimism for Future of the Field
 
SEATTLE, WA -- For the second year in a row, the National Health and Patient Advocate Survey measured advocate backgrounds, practices, satisfaction and outlook on the emerging advocate field.  Health and Patient Advocates for this survey were considered to be paid professionals helping individuals navigate the health care system.
 
“The field of health and patient advocates is new but growing as the health care system remains increasingly complex,” said Robin Shapiro, Chairman of the Board of Directors for the Washington State Health Advocacy Association (WASHAA), one of the organizations fielding the survey.  “There is good news [in The Survey] for patients who want an independent advisor to help assert their wishes and navigate the health care system.”
 
Key Findings
  • The profession of health and patient advocacy seems to be viable, with the overwhelming majority (68%) of independent and employed advocates making enough money to continue doing the work.  Almost all (92%) said they intend to continue doing this work in the foreseeable future.
  • Advocates are highly educated.  Although there is no one specific path to a career in advocacy, almost half (48%) have a Master’s Degree.
  • Advocates continue to report being optimistic, with the vast majority (92%) reporting they believe that the advocacy field will grow in the next five years.
  • The vast majority (90%) of advocates are hired independent of the health care system.
  • Medical/Navigational Services were the advocacy service most frequently requested by patients (67% of advocates reported this as the top service they were hired to perform and 97% reported that Medical/Navigational Services were one of their top three requested services).
 
About the Survey
The survey was conducted by representatives of the Washington State Health Advocacy Association (WASHAA) and the Alliance of Professional Health Advocates (APHA) in order to begin measuring the backgrounds of advocates, some of their work practices and their outlook on the field.  For a copy of the entire survey, please go to: www.advocacycoalition.org.
 
Recommended Actions for Patients
Don’t go alone!  Navigating health care by yourself is challenging and potentially dangerous.  Always educate yourself and have someone (an advocate who can speak for you or help you speak for yourself).  We recommend:
  • Join or support health advocacy organizations to help ensure that the field will continue to grow and advocates will continue to be available
  • Identify an advocate for yourself before a health crisis emerges (this can be a family member, friend and/or a professional advocate)
  • Educate yourself about what being an advocate means, so that you are can effectively discuss your personal health goals, values and choices.  Join WASHAA at our upcoming events here, including our Patient No More Talk at the Phinney Neighborhood Village February 8: http://www.washaa.org/events1.html
 
Recommended Actions for Advocates
  • Join organizations to meet other advocates to help keep up with advocate business practices
  • Share your success and mentor advocates entering the field to help the field grow
  • Track and participate in continuing education and credential of the practice
 
About WASHAA
The Washington State Health Advocacy Association (WASHAA) is a non-profit organization dedicated to helping people transform from patients to full participants in their health.  WASHAA fulfills our mission by: 1. Raising awareness about health advocacy 2. Teaching health advocacy skills and 3. Connecting people to local, relevant health advocacy resources.  For more information visit us at www.washaa.org.  We can’t do it without you - consider joining as a ‘Associate (Supporter) Member’ http://www.washaa.org/become-a-member.html to help our organization grow and never miss a WASHAA update.


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Shop With Amazon Smile and WASHAA this Holiday Season

11/1/2016

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Hi WASHAA Supporters and Members,

With the holidays approaching, you can help support Washington State Health Advocacy Association!

How?  By spreading the word about AmazonSmile
! 
Where? Amazon Smile (www.smile.amazon.com)

​What is AmazonSmile? AmazonSmile is a website operated by Amazon that lets customers enjoy the same wide selection of products, low prices, and convenient shopping features as on Amazon.com. The difference is that when customers shop on AmazonSmile (smile.amazon.com), the AmazonSmile Foundation will donate 0.5% of the price of eligible purchases to WASHAA. 

Many of us use already use Amazon for our shopping needs.  I invite you to click on the following link and ensure you start at Amazon Smile, look for Washington State Health Advocacy Association, and begin your shopping experience there. Every little bit assists WASHAA on their goal to growing the organization, creating more valuable events and webinars, and spreading the word about Health Advocacy in WA State.
Amazon Smile
Email us at info@washaa.org with any questions or concerns. Thank you in advance for your support!
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5 Reasons to Attend WASHAA's 3rd Annual Meeting...

11/9/2015

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Top 5 Reasons to Attend If You Are A…..
 
PATIENT
  • Meet local health/patient advocates
  • Learn what health advocacy is
  • Understand the history of health advocacy
  • Contribute your story to demonstrate the need or value of health advocates
 
ADVOCATE
  • Network with other advocates in the state
  • Join WASHAA to build the health advocate market
  • Learn what health advocacy initiatives are happening in our state
  • Share your opinion about who qualifies to be an advocate
 
INTERESTED IN BECOMING A HEALTH ADVOCATE
  • Network with other advocates in the state
  • Join WASHAA to build the health advocate market
  • Discover what health advocacy initiatives are happening in our state
  • Learn about academic and certificate programs for people who want to be advocates
  • Engage in health advocacy programs that will make a difference
 
ACADEMIC INSTITUTIONS
  • Join the conversation about what programs may be valuable for health advocates
  • Discuss the challenges and opportunities with certificate versus degree programs for health advocates
  • Stay abreast the national effort to credential health advocates
  • Learn about academic and certificate programs for people who want to be advocates
  • Network with other academic colleagues interested in advocate programs from our state
 
PROVIDERS
  • Meet local advocates you may want to partner with
  • Learn how private advocates can support your practice
  • Discuss where you see health advocates providing the most value
  • Share your success stories about how you utilize patient advocacy in your practice
  • Contribute to the discussion about why providers should or should not be advocates
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A Case for the Patient Safety Movement to Embrace the Health Advocacy Movement

10/16/2015

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Author: Bill Thatcher, WASHAA Executive Director

I recently spent almost five years engaging with the Patient Safety Movement across North America. The nonprofit with whom I worked not only initiated their own programs and services to improve patient safety but we also provided grants for the work of many others. At the end of that time I would describe myself as disappointed. I was not disappointed in the passion I felt when encountering patient safety advocates but rather in the entrenched resistance in many healthcare systems and the indifference of the general population, at least until the moment when they faced the possibility of medical errors or unsafe practices by their doctor or hospital. Add to that resistance and indifference the inability to find an adequate business model – be it for profit or nonprofit – to be a funded patient safety advocate and you get a picture of how bleak this field can feel to patient safety advocate insiders.


In fact, the only bright spots I have seen have come from progressive healthcare providers able to present patient safety activities within the context of improving the financial bottom line. I believe what is needed in the U.S. are patient safety advocates who are independent from the very systems they wish to see change. It just isn’t enough to trust only in those nonprofits who, with patient safety as a strong focus, depend upon healthcare insurers, providers, societies or big pharma for their budgets. The risk of being coopted is just too great. An effective business model to achieve such independence is, I believe, the Achilles Heel of the Patient Safety Movement.

This is where health advocacy can help the Patient Safety Movement. Health advocacy includes patient safety issues as a part of its mandate. Rather than that meaning patient safety issues get “watered down,” it provides a larger context for assisting patients by offering additional help needed by patients. Health advocates assist patients in medical, eldercare, insurance, legal and administrative areas regarding their long-term or acute care needs. Many health advocates do not provide all of what is in that list but the breadth of what they are able to cover is, I would argue, a more attractive service to patients and patient families than just patient safety. After all, most patients have the view that their doctor would be sure to keep them from any unintended harm, so why think about something – patient safety – their doctor already has covered? Of course, we know this is not true, otherwise how could more than 500,000 people die in U.S hospitals due to medical error every year? Just look at an August 2015 blog post about the 2014 record of 29 “never events” categories in Massachusetts hospitals: http://www.thepatientsafetyblog.org/2015/08/29-never-events-hospitals.html.

There is more in health advocacy to commend it. Medical schools are already adding health advocacy to their course curriculum and it is possible to see a path forward that could make a career in service of this type much more potentially viable than what presently exists for patient-safety-only advocates. I say “potentially” because the health advocacy field is still facing the need for a bona fide credentialing platform, a universal set of core competencies, and an agreed reimbursement stream. Even with those currently missing elements, health advocates have a much better chance of a future successful professional environment than do patient safety advocates, in my estimation. Many hospitals have already begun to hire staff as Patient Navigators. But just as patient safety advocates can be coopted by healthcare systems that provide funding for their work, so too can Patient Navigators because the needs of patients are not always aligned with the needs of the healthcare system through which they are served.

​I hope it is clear that my purpose here is not to trash talk patient safety advocates but rather to suggest that there is a way for a win-win situation for these two important patient-related fields, where each field could be enriched. Many people I have met working in the field of patient safety are motivated because they themselves have suffered some kind of a loss due to medical error, sometimes grievously so, by losing a loved one in an untimely manner, because of errors. They strongly desire that no one else has to go through what they went through. But passion alone is seldom sufficient for a viable business plan.

Are there challenges facing such a “marriage” of movements? Yes. But I believe it is time for a discussion. The health and safety of patients are principles deeply embedded in both movements. Let’s talk.

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What's Race Got To Do With It?

8/10/2015

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PictureRobin DiAngelo
By Robin Shapiro, WASHAA Chair

It is not every day that you walk into a work meeting and discuss race - or white fragility (defined as the inability for white people to tolerate racial stress, preventing them from engaging constructively across race), but at a recent WASHAA meeting that is exactly how we started it. Led by Robin DiAngelo, our working group was challenged to consider how an absence of diverse experience, opinion and background leaves a gaping hole in whatever work is pursued.  

Her discussion provoked our thinking and shined a light on our own limitations and failings based on the environment we live and operate in. We all like to think of ourselves as anti-racist. But, I know as a white woman I cannot totally understand what it means to be another race.  After listening to Robin DiAngelo, I would like to learn more and be engaged in trying to understand better and take action to support anti-racist living.

The reality is most of us have a long way to go to taking action to really understand what 'inclusive,' and 'diverse' mean in everything we do. Our brief time with Robin DiAngelo sparked a lot of questions from our group:  how do we go about including people from communities we don't know? Do we stop working on our program until we figure this out? What would it look like to invite and incorporate different needs and priorities from communities?

Our working group discussed these questions and knowing that we, as a primarily white group have a lot of work to do. We will be contacting communities to see how we can engage in conversation about health advocacy and how we see and experience health advocacy challenges from differing points of view. If you are receiving this newsletter and want to join the conversation - please contact WASHAA at info@washaa.org. If you have suggestions about communities or people for us to talk with and/or people who want to join our efforts, we would love to hear from you!

DiAngelo, is an expert on race relations and is the current Director of Equity for Senior Services, Seattle/King County. She has been a consultant and trainer for over 20 years on issues of racial and social justice.

Have comments? Please Email Robin and submit your feedback

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Do Patients Have Power in the Health Care System?

7/21/2015

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By: Bill Thatcher, WASHAA Acting Executive Director

I’m constantly reading and tweeting about healthcare issues, patient safety and health advocacy. Occasionally I find this “world” of health issues connecting to other “worlds” of importance to me. That’s what happened just this past week. As I was listening to a recent presentation by Robin DiAngelo on White Fragility: Building White Racial Stamina, I was struck by her descriptions of the power imbalance that our culture creates which has systematically and historically polarized the races. Like the fish, we have been swimming in our own culture our whole lives, and don’t even realize we are in it. I’m not speaking here about acts of racism but rather of a system created for white Americans by white Americans. Similarly, our health care system has huge biases that do not help patients. 

The system truly is stacked against the patient/family in terms of the distribution of power and decision-making (1). Unless healthcare professionals invite patients/families not just “to the table” but into the power dynamic, there can be no balance possible. For even with such an invitation to sit at the table, it matters whether there is also a sharing of power. Patient Advisory Committees, by their usual description, can only advise. Who ultimately makes the system decisions? How many stories do we need to hear from healthcare professionals who, suddenly finding themselves as patients in their own system of care, realize how imbalanced the power is even for them as patients (2)? 

This is extremely important because when patients and families are given the opportunity to be heard, healthcare professionals may be surprised by what they hear from patients. Whether it is a matter of tone or how procedures and policies translate into what patients actually experience, it is incumbent on healthcare professionals and administrators to create opportunities to listen humbly and partner with patients. 

Patients/families must share in the power in the healthcare system or they will find themselves dismissed the first time they speak an unpleasant truth.

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