What is a Carepartner?

The words we use matter. The word caregiver is often confusing for patients and their families, especially in the context of limited English proficiency and language barriers, as the word “caregiver” in health care is used interchangeably to refer to the doctor as well as to non-clinical individuals who are caring and supporting a patient.

Patients living with chronic illness, disability, rare disease,  life-altering, and life-limiting diagnoses often describe feeling a sense of a loss of autonomy and independence. They may feel guilt for needing the support of loved ones and not being able to fully care for one’s self or fulfill household obligations due to their health conditions. Many patients say they dislike needing a caregiver and despise the word. Needing a caregiver is a constant reminder of their illness and loss of dignity. The word “carepartner” is more positively received. A carepartner is a spouse, life partner, sibling, parent, family member, friend, or colleague who is there to support a person living with their diagnosis(es). A carepartner can be thought of as a team mate and support who is there, in sickness or in health; their actions defined by love and empathy, not sickness.

My First COVID19 Vaccine: What to Expect

My First COVID-19 Vaccine: What to Expect  

Last week I had the opportunity to do something surreal. I received my first dose of the COVID-19 vaccine. Here’s a step-by-step look at my experience and what to expect.

With my mask on, I walked through parking lot M of the Meadowlands Complex where there was a good number of cars. An officer from the National Guard greeted me at the gate (note: don’t forget to thank all the National Guards for their service!) at the entrance to the ramp leading to the Meadowlands Racing & Entertainment Complex which has been converted into the Bergen Country Vaccination Mega Site.  He directed me up the ramp and assured me that officers from the National Guard would be inside to help guide each step of the way.

I had a copy of my eligibility confirmation for tier 1A and my appointment confirmation ready in hand as I walked through the Vaccination Entrance door. Make sure to bring yours with you to make things go smoothly!

It was 12 pm. There was no line. (Amazing!)

Inside at the first counter, I was greeted by 3 officers, one of which verified my confirmation forms and asked to see my driver’s license. I was given a credit card-sized plastic white card with a QR square and told to stay to the left and walk down the length of the corridor marked “Registered”. There was another line for “Unregistered”. When I inquired for more information, I was told that this allowed people to register on-site if they did not do so already. In NJ, you can pre-register for the COVID19 vaccine here: https://covidvaccine.nj.gov/

I walked down the long corridor until I reached another National Guard officer who directed me to an area with about a dozen tables in 2 rows with Hackensack Meridian Health (HMH) representatives helping individuals.  I waited about a minute for the next available table and was asked by the associate for my confirmation forms, driver’s license, and insurance information. The associate was very friendly and offered a complementary HMH mask and hand sanitizer. (definitely grabbed a mask.)

I was given a small index-sized card,  COVID-19 Vaccination Record Card, to fill out my first and last name and date of birth. I was instructed to keep this card safe as it would be the records of my vaccinations and the vaccine details. (In 2021, it is very disappointing that I can’t have this easily digitally stored. This is not the vaccination site’s fault but a bigger problem in healthcare called lack of interoperability. Today is not the day for that conversation.)

Next, I was asked to fill out a form with COVID19 Vaccine Discussion Questions. As someone with a history of anaphylaxis that needed emergency treatment in the hospital, I marked “YES” for question 2 “Have you ever had an anaphylactic or severe reaction to any vaccine or injectable medication?”.

I was given handouts on:

1.     the Pfizer vaccine (which was the brand that this site was administering; the Moderna vaccine was not available here today.)

2.     post-vaccination facts, with details such as common symptoms to expect

3.     v-safe, the after vaccine health checker. This is an easy-to-use smartphone app that helps track vaccine safety.

 The representative scheduled my 2nd vaccination appointment and wrote it on the COVID-19 Vaccination Record Card and I was told to walk down to the next checkpoint.

Sure enough, a short walk later, another National Guard officer greeted me, scanned my QR card, and directed me to the next stop.

This took all of 5 minutes from the moment I walked through the front door.

At the next checkpoint, I could see the vaccination area and felt my stomach sink. As a well-documented vasovagal (AKA fainter), I prayed to all that was holy that I didn’t faint and then have an anaphylactic reaction.

When it was my turn, I was asked to sit at the next open seat at one of the tables. One of the volunteers reviewed my paperwork and we discussed my history of anaphylaxis and fainting. A nurse was called over, we discussed the protocol. She instructed me that the injection had to be administered while sitting as there were no beds to accommodate lying down (as is often the alternative when faced with a fainter…like me.) The nurse went to get an epi-pen. The nurse was wonderful and kept me in conversation and to focus on my breathing. I closed my eyes while I received the injection in my left upper arm (no, I don’t watch).

The woman administering the injection was fantastic. There wasn’t even a pinch. Completely painless. I was asked to sit for a few minutes to see how I was feeling. I felt fine.

 I received a sticker that said “I made COVID-19 History” with the time 12:25 pm.

My COVID-19 Vaccination Record Card was filled out with the lot number for my Pfizer vaccine, today’s date, and the name of the volunteer that administered my shot. I was reminded to not lose the card. I took a picture of it with my phone just in case.

The nurse walked me over to the next checkpoint for the observation area where she let the National Guard officer know that I needed to be monitored for 30 minutes due to my history of anaphylaxis. All others are monitored for 15 minutes. All the chairs were well spaced apart and there were only a handful of people there waiting. I was given a seat in the corner of the first row of the observation area where two National Guard officers were stationed. They checked in with me to ensure I was feeling ok every few minutes. There was also a volunteer that was walking around to briefly see how everyone was doing and feeling after their shot. He shared in conversation what his experience was with his first dose (which was very positive).

While I waited, I scanned the v-safe QR code and registered myself in about 2 minutes.

 There was no pain or discomfort at the injection site. The band-aid was the only indicator anything had taken place.

 After a half hour, I walked towards the exit checkpoint where I thanked the officer for their service and my plastic card was collected.

 There was a banner for a photo-op and you know how the saying goes, if you didn’t take a photo, did it even happen?

Immediately after the shot, I drove home minutes just in time to be only a few minutes late for my next Zoom meeting at 1:30 pm.

 The only immediate side effect to report was hunger because I missed lunch.

After about 6 hours after my vaccination and I had a tiny bit of soreness (scale of 1-10, the soreness was a 1.) The next day the soreness was more noticeable at about a pain of 4. But I still managed to go through my day with no restrictions. I reported my mild soreness and updates daily via the v-safe app and still do.

Next dose: Feb 9th.

 Thank you to everyone at Hackensack Meridian Health for a seamless COVID-19 vaccination experience. All of your hard work shone through.

 Thank you to the wonderful nurse, I believe Michelle, who carefully reviewed everything regarding my history of anaphylaxis and fainting, stayed with me through the injection and ensured I got over to the observation area without any issues.  

Thank you to all of the NJ National Guard officers who are working to ensure all goes smoothly and we move the needle on getting NJ to herd immunity as soon as possible. Thank you for your service!

#ThisIsOurShot #VaccinesWork #PatientAdvocacy

HIMSS20 Update: Do No Harm

It is after much consideration and many hours of lost sleep that I have made the decision to not attend HIMSS20. There were significant circumstances that needed to be considered. The safety of the patients I work with, the disabled family members I care for, and the safety of my own family and local community take priority over the many landmark professional and networking opportunities offered to me at HIMSS. Here is my official statement of cancellation.

I'm reaching out to let you know that I have made the incredibly difficult decision to not attend HIMSS20.

As an individual patient advocate, I am truly humbled to have the opportunity to represent the patient and carepartner voice in discussions about digital health, internet of things, innovation, the patient experience, patient engagement, and consumerism. I take these opportunities very seriously, recognizing how rare they are, especially in the conference setting, and the responsibility that comes with them.

As you may know, my day to day is spent in cancer centers and hospitals, with often very sick, very immune-compromised patients in active treatment for cancer. I have been carefully following the reports from WHO and CDC as well as local media surrounding the coronavirus. I have to weigh the potential consequences of attending HIMSS and returning home with an unsuspected case of the virus and the impact it could have if I return to my daily patient advocacy work in working with people at their most vulnerable time of their life. Similarly, as the caregiver to 2 disabled adults and a mother with small children, a potential illness, self-quarantine, or mass quarantine of a plane would be an unmanageable burden for my family. 

I have never cancelled an invited speaking engagement or interview. This year's HIMSS20 had 6 invited speaking engagements and 3 recorded interviews on my calendar. It is with a great disappointment that I have decided to not attend. Please know that this has been one of the most difficult professional decisions I have ever had to make. I greatly apologize for any inconvenience this late cancellation may cause in the scheduled programming. I do hope that future events will continue to be supportive of the patient and carepartner voice and thank you for all the opportunity that was given to me at this year's event. I wish you the safest of travels and best of luck with the conference.

What is Unblock Health?

Unblock Health is the key to the top 4 barriers patients, carepartners, and consumers face in making informed, empowered decisions about their care. The new roaring 20's will be the era patients fight back against data blocking, armed with Unblock Health. Unblock Health is the answer to addressing information blocking where patients are, in their local communities. More details here: https://www.unblock.health/blog/what-is-unblock-health/

The New Roaring 20's

As the 2020 New Year celebrations come to an end, our real work begins. These Roaring 20's will be the era of the patient & carepartner, with our unmet needs, barriers, and challenges being brought front & center.

We are a force to be reckoned with. Our lived experiences and expertise are a secret weapon & a solid business strategy for those looking to authentically transform health care to invest in.

Navigating the chaos that is our health care system while living with a life-altering diagnosis or multiple co-morbidities can literally break a person over and over.

Remember, we are:
✨Bigger
✨Bolder
✨Louder
✨Fiercer
✨Brighter
✨Faster
✨Kinder
✨Smarter
✨Stronger
✨Unstoppable

TOGETHER

The Other Side of Pinktober

It’s October, or Pinktober, as we witness the transformation of basically everything, from tortilla chips, to dogs, clothes, billboards, feather boas, and all of social media for breast cancer awareness. It’s time to refresh the message. We are aware of breast cancer. What many aren’t aware of is that a specific type of breast cancer, metastatic breast cancer (MBC), has no cure. It will kill every single person diagnosed with it. That’s a far cry from all the hopeful pink washing that happens every October. It’s not pink, cute, fluffy, or fashionable. The only thing that will save those with MBC is research that will drive cures and improve the lives of those living with the disease.

So what’s it like living life with MBC?

During our #bcsm tweet chat 2 weeks ago, a question was posed about what we each could do to bring awareness to MBC during Pinktober. I struggled for 2 weeks to try to find a good answer. One I could act upon. I needed to DO something.

As an oncology patient advocate, I’m passionate about elevating the patient & carepartner’s voice. I am a firm believer in sharing patient stories. That’s where the authenticity is. That’s where we can all learn and best support each other. I have been blessed to be a part of the #bcsm community and have learned so much over the last 2 years. One night it dawned on me. I wanted to bring all of the lived MBC patient and carepartner experiences to reside in one location. While anyone can look up the meaning of MBC, it’s hard to find what it’s like really living with MBC.

My colleague and good friend, Jen Horonjeff, is the founder of Savvy Cooperative, a patient co-op that emphasizes the importance of including patient insights in designing healthcare. Savvy’s patient community recently launched a new initiative: Animate Health. Animate Health does just that, it goes beyond the clinical and textbook definitions of a condition and helps animate what people actually go through in light of a diagnosis and how it impacts them physically, socially, emotionally, financially, and beyond.

Animate Metastatic Breast Cancer

I asked Jen if we could create one for MBC and she was fully supportive and spear-headed the initiative. We would like this to be our way as advocates to bring awareness to the patient experience of living with MBC during the month of October (and beyond!). We would like to understand what areas are of most interest to the MBC community. We want to hear your stories of living with MBC, the stories of loved ones, and the stories of those who have been stolen too early from us by MBC.

We would be honored if you would join us in this quest to bring reality to Pinktober and breast cancer awareness as we know it. Let’s animate MBC for those who don’t understand its dramatic impact. Our hope is that everyone who wants to can contribute their thoughts, experiences, and stories throughout the month of October and continue the conversation throughout the year. Those with MBC know that awareness does not end when the month of October is over.

Fulfilling a promise

In one of my last messages to Beth Caldwell, a fierce advocate for MBC who was killed by this horrible disease, I told her how grateful I was to have met her through the #bcsm tweet chats and how much I have learned from her. I also promised her I would find every way I could to drive more awareness about MBC and to elevate the patient voice. I hope I can work towards fulfilling that promise with this project and with your support. Please let me know if you have any questions.

If you would like to help Animate Metastatic Breast Cancer, please:

• Visit Savvy’s Animate Metastatic Breast Cancer

• Register to create a Savvy login (all information on Savvy is kept private, never sold)

• Once logged in, select Animate Health from the menu, click on “Metastatic Breast Cancer”

• Review the current animation categories that span a wide variety of topics (currently over 20 cards)

• Add comments or stories in any or all categories with your lived experiences and perspectives

• Add a new category if a topic of interest is not represented

• Rate how much these areas impact your life, on a 0–5 star scale (no impact to huge impact)

Questions?

Reach out to jen@savvy.coop or enlighteningresults@gmail.com (Grace)

I look forward to continuing to learn from all of you. Looking forward to refreshing breast cancer awareness together.

The Secret to Authentic, Human Centered Point-of-Care

Traditionally, point-of-care (POC) has been the space where diagnoses or treatment decisions are made or where disease state education takes place, typically within the confines of doctor’s office or hospital. Patients and their carepartners no longer live in this arbitrary space. Why do we continue to incentivize this model? Why do we continue to prioritize and dedicate billions of dollars annually to innovating and marketing in this outdated space? Why do we continue to design innovations and digital tools that can only assist patients within the confines of this traditional space, as opposed to connecting the dots and streamlining continuity of care where it happens the most, in real-life?

We must stop visualizing POC as a stationary moment and open the aperture to see the potential of a dynamic continuum of care. We must stop viewing POC as where the doctor is and explore the broad spectrum of places where patients are and live. Disease state education, treatment decisions, and the pursuit of health predominantly happens beyond the 4 walls of the exam room and hospital. POC is happening at retail clinics and via telemedicine. Social media has led to the development of powerful peer-to-peer networks that support patients and carepartners with round-the-clock dialogue with global perspectives and expertise. We must stop solely focusing on digital, sleek, buzzword-filled innovations for the future. We must not forget the power of the human touch, rolling up our sleeves and venturing out into local communities to connect with real people in their daily lives. A study recently published by the NEJM reports on the successful management of uncontrolled hypertension in non-Hispanic African American males at barbershops. You read that correctly. Barbershops. Specialty-trained pharmacists fostered trusting relationships with barbershops and their clientele and demonstrated significant reductions in blood-pressure with medication management. This may be the most powerful POC yet. We need to blow the doors off of this example of real-life POC STAT.

Think about your life right now. Where are places in your local community that you faithfully frequent? Perhaps it is a house of worship, where you exchange in conversations with others from your local community regularly. Conversations about health are happening here. Perhaps it is a barbershop or, for ladies, a beauty parlor or nail salon. Some people may skip their follow-up appointment with their primary care doctor, but not their monthly haircut, color and set, or gel manicure appointment. Conversations about health are happening here. Perhaps it’s the local laundry mat or dry cleaners. Information about health is being exchanged here. Perhaps it’s the local deli or bagel shop. Some may skip filling their prescriptions, but never their Sunday paper, coffee, and buttered rolls. Some may not manage their blood glucose or count calories regularly, but they’ll never skip playing their lucky numbers at the corner bodega. We have become so wrapped up in innovating to improve healthcare that we have become impervious to the sound of the pulse of our local communities. Where is all of the budgeting and innovation for these avenues? Where are the priorities? Where are these conversations?

Please tell me. I’m here waiting, listening.

Grace Cordovano, PhD, BCPA is a board-certified oncology patient advocate, patient experience enhancer, and Citizen Health 2018 Ambassador.

Follow her on Twitter: @GraceCordovano

Direct-To-Consumer Genetic Tests: Who Are They REALLY Benefitting?

The FDA approved the Personal Genome Service Genetic Health Risk (GHR) Report for BRCA1/BRCA2 (Selected Variants), the first direct-to-consumer BRCA test by 23andMe that may be performed in the comfort of one’s home without the need for a prescription. Press releases and even the FDA announcement do not thoroughly detail the many limitations and conditions associated with the test. Individuals many incorrectly interpret what the test’s results may show or may over-extrapolate how the test is meant to be used. In healthcare, it is of essence to be considerate of people’s health literacy levels so as to encourage informed decision-making based on factual, credible information. It’s also important to be fully transparent as to how the test’s results are benefitting the actual company, in this case 23andMe, as well as other third party companies. This needs to be spelled out front and center. Not just buried in the legalese of the terms and conditions and privacy policy.

Here are the limitations, caveats, and fine print that everyone needs to know about regarding the latest FDA approved 23andMe offering:

1. The test only detects 3 out of more than 1000 BRCA mutations. BRCA1/BRCA2 breast cancer gene mutations are most common in Ashkenazi Jewish populations. This test does not benefit the general population.
2. A negative result does NOT rule out the possibility of other BRCA mutations which may pose an increased risk in cancer.
3. Not all cancers are BRCA mutation driven or hereditary. Some cancers develop sporadically. A negative result does NOT mean one has no risk for developing cancer.
4. People who test positive should seek the guidance of a medical professional and understand that they will most likely be retested in a supervised, clinical setting.
5. A positive test result may lead to fear, anxiety, and distress.
6. Patients and clinicians should NOT make medical decisions, such as opting for prophylactic surgery or anti-hormone therapy, based on 23andMe test results.
7. This test is NOT a substitute for consulting with your doctor for cancer screenings, genetic counseling, or managing lifestyle factors that may impact one’s cancer risk.
8. Anyone with a strong family history of cancer should seek professional medical guidance for appropriate management.
9. Your web behavioral, genetic, or self-reported information may be used by the company internally to improve their services or sold to third party companies for research, marketing and advertising, or commercial purposes. Read the privacy policy and the terms and conditions.

The test may only benefit a very small population of people, specifically those of Ashkenazi Jewish descent, however it is being marketed and offered to the general public. People will purchase the test for a variety of reasons. Regardless of what their reasons are, who the test benefits (or doesn’t), all of the people who submit their saliva samples for testing will have their data and results utilized in one way or another or sold to third party vendors for commercial purposes. Any improvements in company services, commercial, or research advancements that happen as a consequence of using customer data offers zero recognition or compensation for their “participation”. In the end, who really gets the most benefit?

Pharma's 50 Shades of Gray: Including Patients in the Clinical Trial Life Cycle

“Is there a form I could fill out to provide my feedback?”

The silence in the room was deafening.

I exhaled with a furrowed brow, feeling extremely disappointed, wanting to stand up and apologize on behalf of the entire room that was seated so quietly. Apologize for the practices, procedures, and ideologies that had failed this woman panelist on stage, and so many others. Apologize on behalf of an industry that is advancing on so many levels, yet dropping the ball in too many priceless ways.

“Is there a form I could fill out to provide my feedback?”.

This simple question came from a vibrant young woman who just delivered a powerful narrative that brought a quiet room to a roar with the applause of a standing ovation.  This young woman detailed her harrowing patient experience of dying of advanced cancer to a tremendous success story reveling in the miraculous power of personalized medicine. She is years post the clinical trial that saved her life.

“Is there a form I could fill out to provide my feedback?”.

If she hadn’t stood at the podium and told us her story, no one would’ve known the horrors she witnessed, felt, experienced, or thought. If she hadn’t stood on the stage and articulated her story, no one would have known about her difficulties of finding the trial that saved her life. Without her story, no one would’ve heard her suggestions for improvement. If she just sat in her seat like every other member of the audience, no one would’ve known how scary, how exhausting, and how painful her journey was. Thank goodness she was invited to share her story! Otherwise, she’d just be another anonymous clinical trial endpoint successfully met.

It’s gravely concerning that after participating in a successful trial, no one invited her to help improve the process. If an educated, well-spoken, personable individual with a miraculous response to a cutting-edge therapy isn’t included in the enhancement, refinement, and co-design of clinical trials, who will be?

It’s common to hear from patients that they are not asked for their insights during or after participation in clinical trials. There is an aura of reverence surrounding people who have participated in trials. These individuals have made a profound sacrifice and leap of faith. Trial participants have agreed to introduce a foreign substance, a hypothesis, into their body, realizing that this unknown may save their life, end it, or run the gamut of all of the possibilities in between.

Imagine being diagnosed with terminal cancer, being sent home to die. Shattered. In physical, mental, and spiritual pain. Would you risk trusting an unknown therapy and introducing it into your frail, already dying body? Could you picture yourself taking an experimental agent and hoping for the best? How many of us are truly brave enough to put our trust and fate into the hands of science? Wouldn’t you agree that these experiences are profound, rare, and worth their weight in gold to thoroughly comprehend?

There are over 21,000 clinical trials listed in clinicaltrials.gov as recruiting in the US.  Were these trials designed to be tailored to the lives of the people living with a diagnosis and inclusive of all lives with a diagnosis? It depends on whether the expertise of patients and carepartners were included throughout the continuum of the clinical trial life cycle.

Over the last year, it’s been my personal curiosity to ask members of pharma if their company includes patients in the clinical trial life cycle. When I broach the subject, there is a broad spectrum of reactions, the majority of which are accompanied by clear discomfort, agitation, defensiveness, dismay, and confusion. These responses all fall into an ambiguous gray area. Here are 50 answers I have received in response to the question: Does your company include patients’ expertise and insights in the clinical trial life cycle, from study design planning, during trial implementation, after trial closeout, and post-launch of product?

1.     There are compliance issues.

2.     There are regulatory hurdles.

3.     What business incentive is there to do that?

4.     Patients don’t know anything about clinical trial design, management, or operations.

5.     We don’t have a budget for that!

6.     The FDA doesn’t require patient feedback or insights in the clinical trial process for drug approval.

7.     (Look of confusion)

8.     Our company is patient-centered. We don’t need patient insights.

9.     We don’t have the staffing to do that.

10. Pharma doesn’t traditionally speak with patients.

11. Our stringent timelines cannot accommodate this.

12. Where would we find patients to participate?

13. (eyes narrowing) Are you one of those patient activists?

14. Patients aren’t well spoken.

15. Patients aren’t professional enough to participate in these conversations

16. Our legal team would go into cardiac arrest.

17. We do not have the technology in place to do this.

18. It sounds like a great idea but upper management would never approve.

19. Our marketing team is working on a campaign.

20. We only work with non-profits.

21. It’s on the backburner for this fiscal year.

22. This is a conflict of interest.

23. We’re one of the top biopharmaceutical companies in the industry. We know what we are doing.

24. Do you know how much it costs to execute a clinical trial?

25. (eye roll)

26. Our clinical operations team runs like a well-oiled machine.

27. Do you have any references or data to support the benefit of including patients in clinical trial design?

28. Patients are unreliable and volatile.

29. That’s a waste of time.

30. Working with patients is a pain in the @ss.

31. How could pharma work with patients? They don’t trust us!

32. Sounds great in an ideal world, but we have pressing deadlines to meet.

33. Patients have their own agenda and won’t collaborate.

34. We can’t base our clinical trials on patient complaints.

35. Our company runs successful trials and gets approvals without patients involved in the process.

36. That’s another trend that will phase out soon.

37. Whose responsibility would that even fall under at our company?

38. We are watching to see how other companies are doing it.

39. Those tactics are for companies that can afford the “bells and whistles”.

40. We tried. It didn’t work.

41. We are too small of a company to implement this.

42. We don’t need more paperwork.

43. What is the return on investment?

44. We’ll talk to patients but we can’t pay them.

45. We are too big of a company, with locations all over the world. How could we coordinate this?

46. We are so overwhelmed, we can’t take on another initiative.

47. Is there a standard operating procedure for implementing this?

48. What happens if they all start talking about the adverse events of their treatments?

49. How can we trust patients?

50. Our investors don’t care about patient-centered practices and co-design. They want drugs going to market.

Pharma’s 50 shades of gray does not run industry wide. There are pioneers who are committed to changing the status quo, actively working with patients and including them on many fronts. It is evident that these trailblazers are excited by their partnerships with patients. They speak loudly and proudly about their patient-centered initiatives, with an enthusiasm that is invigorating and resounding. They acknowledge that this isn’t a just a nice gesture or outreach program. Partnering with patients is solid business sense.  Collaborating with patients bridges silos, brings meaning to daily work, and creates unique opportunities for experiential learning.

It is important to note that those within pharma who collaborate with patients are more open to leveraging technology and machine learning, discussing mobile health, digital platforms, and telehealth, exploring benefits of utilizing blockchain, as well as recognizing the importance of patient-reported outcomes. Coincidental? Absolutely not.  There is unprecedented value and power in including patients in optimizing the drug lifecycle. Augmenting trials to patients’ values, preferences, and needs is a solid win on all fronts. Do not mistake this as another passing trend!

Is your company somewhere in the 50 shades of gray? What is holding you back? Is your company a pioneer in being authentically patients first and collaborating with patients? How can early adopters share best practices to eliminate every single one of these 50 gray areas so as to collectively move the industry forward to being truly patients first?

The Need for Healthcare Experience Literacy

As an advocate and carepartner for over 20 years, I have seen things I can not unsee. I have experienced things I can not forget. I have heard things I can not unhear. I have come to understand all of my experiential learnings as reflection of a single, major omission in US healthcare. We don't teach anyone how to be a proactive member of the US healthcare system. I'm not just talking about patients or their carepartners. What about healthcare policy decision makers? How about those within pharma designing new medications? What about innovators creating new solutions to advance healthcare?  Shouldn't we all have the same foundation of knowledge to be members of our healthcare system? How are we preparing the next generation for healthcare?

Our pre-K through grade 12 public education is lacking severely in healthcare experience literacy. Literacy alone is not enough. Health literacy not enough. This is a call-to-action for healthcare experience literacy. Imagine the possibilities of ingraining the essentials of the healthcare system incrementally from early childhood through young adulthood! See my latest publication for more details: 

https://medium.com/savvy-cooperative/conquering-the-next-frontier-healthcare-experience-literacy-97eb5f0ffd8d