Paradigm Shift Please: Reactive to Proactive; Illness-Based to Wellness-Based

Yesterday evening I had the good fortune to participate in the first half of the weekly Healthcare Leadership chat (#hcldr). As always the audience was filled with a combination of clinicians, patients, advocates, techies, community builders and those of us who don many hats. As always the conversation was rich and thoughtful. And, as sometimes happens, there was a tweet that stuck with me for hours and my 140-character response feels insufficient to address the concerns I have.

The conversation and the chat questions revolved around the similarities, differences and potential applicability of humanitarian efforts, like those of #hcldr guests Doctors Without Borders, to population health. Again, relaying the richness of the conversation is not my intent and will not be relayed in this post. Instead a single tweet seems to enunciate for me one of the challenges we have in healthcare today. And, as the oft-quoted G.I. Joe reminded me and countless others in the mid-80s, “Knowing is half the battle.”

The second chat question was “What should be the standard of care in low resource settings?”

My initial response was:

Always start w/ patient goals, regardless of zip code. MT @hcldr: T2: What should be standard of care in low-resource settings? #hcldr

— Stacey Tinianov (@coffeemommy) October 28, 2015

As I typed, I realized how ethnocentric my response was. Zip Codes is US terminology. Fail. My intent was to convey that regardless of where a person lives, or their forced standard of living, their personal choices should absolutely be respected.

The T2 response that raised the hairs on the back of my neck was the following:

T2. In resource limited setting even more important that the standard be prevention rather than treatment #hcldr

— Brian Castrucci (@BrianCCastrucci) October 28, 2015

Depending on how I read this statement I either agree or vehemently disagree:

• In a resource limited environment, prevention or risk reduction should be fundamental. AGREE.

• In a resource rich environment, prevention/risk reduction is less important and treatment after the fact is okay because it’s available. Vehemently DISAGREE.

After a bit of a back and forth online, I am 100% convinced Brian intended his statement in the manner with which I agree. However, the statement and the conversation bring up a much bigger issue and a much bigger reality.

Our US healthcare system, in a resource rich area rife with pockets of inequality, is an illness based system. By and large we wait for people to get ill, treat them, treat the side effects of treating them and then treat them when the original medicines/treatment produces unintended negative consequences.

Focusing on risk reduction and prevention where prevention is possible is THE absolute way to go, regardless of zip code, latitude, longitude, ethnicity, socio-economic status or any other defining characteristic demographic. There is absolutely no such situation where improving heath literacy, personal accountability for health and striving to reduce the incidence of disease doesn’t make sense.

Resource limitations are relative. In instances where clean water, shelter and food are scarce, resource limitations are obvious. However, when we look at elements like clinician burnout, appointment backlogs, insurance reimbursement backlogs, caregiver energy, patient emotional well-being, caseload overload, etc. we can and should consider such resources as limited. The mindset that, in ‘resource rich’ areas we have the luxury of focusing on illness treatments rather than reducing incidence and prevalence of illness is, to be blunt, bass-ackwards.

Nearly a year ago, I created a flip idea based on generating incentives to shift from an illness based into a wellness based system. Flip 28: Create Preventive Care Incentives: Incentivize patients for on-time wellness and preventative care. 

Admittedly, this was my first flip and the content was lacking some of the specifics that would have made it easily actionable. But it is still a damn good idea. I’d like to resurrect the idea and join forces with those who already see the incredible need and benefits from shifting from reactive to proactive mode in healthcare. I’d also like to help highlight people and organizations that have achieved success with a preventative care model because, for some, the catalyst for change is the ability to visualize prior successes.

Just because people can afford treatment doesn’t mean that treatment is the ideal course of action. Imagine the emotional and financial benefits to reducing illness risk in individuals and preventing illness in the population. Imagine the luxury of a system not overtaxed with sick that has the ability to spread valuable resources to areas that require treatment. Imagine a healthcare system that focuses on protecting health rather than trying to re-establish a quality of life after the devastating impacts of chronic disease.

In partnership with others, I’d like to shift the paradigm from: “In a resource limited environment, prevention or risk reduction should be fundamental” to “In every environment, health education and support to drive personal risk reduction and population disease prevention is fundamental.”

Please let me know if you’d like to help.

Five days, three cities, two conferences and one triathlon

Five days, three cities, two conferences and one triathlon.

It was a busy week.

Last year I crashed the Stanford Medicine X party for an evening social. This year I was the fortunate and very grateful recipient of golden tickets from two well-respected innovators in the healthcare space. Anne-Marie Cunningham got me in the door at MedX Ed, a two-day medical education conference focused on the question “What if we…?”

And GillesFrydman, founder of ACOR and co-founder of SmartPatients, expanded my pass, and my mind, by welcoming me in to the official 3-day Medicine X escapade.

In between the two, I was fortunate enough to attend the first day of morning sessions of ASCO’s Breast Cancer Symposium to not only learn about the latest and greatest in breast cancer research and treatment but to meet a handful of luminaries in the field and especially in the world of #BCSM.

My conference goals were simple:

• Learn as much as possible across both conferences
• Meet the multitudes of people who have been so instrumental in my healing as a breast cancer patient and my evolution as an advocate
• Live tweet as much knowledge to the masses who are unable to attend in person

Before the learning could commence, the gratitude had to be expressed.

The magnitude of positive impact on the following individuals is difficult to articulate. Whether they provided emotional or educational support or whether they simply are leaders in the space of patient activism, each one of the following people has been fundamental to my growth as a patient, as a person, as an educator and as an advocate.  

Each long-awaited face-to-face encounter was like unwrapping a present that you've anticipated for years. Words were pretty inadequate for some of these in-person 'reunions' so hugs were a defacto replacement. 

Hanging out on the West Coast with Alicia (@stales)

Becky (@rjhogue), me & Marie (@JBBC)

The highlight of MedX Ed Day 1 happened moments after I entered the main stage area. Attending with a friend who also planned to live tweet the event, we chose a high table in the back for its access to power and laptop space. Within minutes of setting up shop, Dave deBronkart walked in. Dave is a founding father of the ePatient movement, fondly referred to as @ePatientDave and a man I’ve wanted to meet for some time. He has his own cancer story but, in my mind, the most powerful part of his story is not thriving eight years after a Stage IV cancer diagnosis, it is the empowerment he has modeled for all patients that received a diagnosis since declaring himself an e-patient in 2008.

Hey @corrie_painter look! @coffeemommy found me! #medx pic.twitter.com/j7F4t7zJuP

— Dave deBronkart (@ePatientDave) September 23, 2015

MedX Ed vacillated between a sage on the stage model and an intimate series of breakout groups focused on transforming the educational experience for the medical community. We shared our personal experiences with social media as a tool for education as well as the power of stories and experience to help generate understanding of the patient as a whole person beyond their disease. There were several occasions where the #IWishMyDoc / #IWishMyPatient theme surfaced and each occasion was met with spirited and respectful conversation about the need to create an environment of trust, respect and empathy that focuses on patients as more than the sum of their diseases. 

On Friday, I trudged through morning traffic to San Francisco for #BCS15. My first priority was to meet Dr. Deanna Attai and give her my very personal thanks for all of her contributions to the #BCSM community and the breast cancer community as a whole. We found each other just prior to the opening session and, without hesitation, she said, "We must take a picture!" In the #BCSM community, it is widely understood that, if there is no photographic proof, it simply could not have happened.

Great to meet @coffeemommy! #bcs15 #bcsm pic.twitter.com/0xt40zPKyk

— Dr. Deanna Attai (@DrAttai) September 25, 2015

As we listened to the "State of the Art Breast Cancer Care: Past, Present and Future" I tried to live tweet as much as possible but found myself needing to focus on the rich content in order to understand it. I saw my disease pathology discussed and took away a few key nuggets:

"Chemotherapy only effective in preventing early (first 5 years) recurrences" 

Personally this statement makes me even more comfortable with my decision to have the OncotypeDX test and avoid chemotherapy.

"Late recurrences remain a major problem" 

Personally, this statement scares the $hit out of me which I why I continue to educate others on the needs and benefits of focused research.

In between presentations, I was also fortunate enough to meet Dr. Don Dizon, a physician well-versed in bringing up topics otherwise swept under the rug, namely the sexual side-effects of disease and treatment. 

On Friday afternoon, I traveled 20 miles south back to Palo Alto where it was 20 degrees warmer and might as well been a difference conference planet. The Breast Cancer Symposium followed the classic, if antiquated model of presenter after presenter in a large ballroom. MedX followed a similar large main stage concept but augmented the stage with club lighting, club music, a plethora of balloons and various statues of Zoe Chu, the MedX mascot.

The REAL Zoe Chu & Alicia

The environment was fun and energetic but the advocate in me kept considering how many additional patient and/or med student scholarships could they have extended if some of those dollars were spent differently.

 Left: A little lunch break with the inspirational Liza Berstein (@itsthebunk) & #HCLDR co-founder Colin Hung (@Colin_Hung)

Below: Finally meeting Natrice! (@Natrice)

Saturday morning, rested and rejuvenated I chose to zero in on a single conference rather than split my time again. I chose MedX for the workshops and small breakouts as well as the mainstage lineup. More heartfelt meet-ups turned tweet-ups but none more exciting than being gifted my pink socks by Bill Kelly. The #pinksocks began at HIMSS when ReelDx COO Nick Adkins donned them reminding us all that we are driving a healthcare revolution, starting from the ground up. I have coveted the pink socks for many months and so I promptly donned them, to the excitement of many and the consternation of anyone with any fashion sense.   

Although both conferences were to continue on Sunday, I knew Saturday was my final conference day. Sunday had been spoken for months before by a friend who wanted to complete her first triathlon. We had matching tri suits and it was a high priority for me (despite the fact I had not been swimming since my mastectomies!).

So Saturday evening turned into a bit of a dance party as ePatientDave passed around vintage ePatient t-shirts and we grooved in our matching pink socks to Bruno Mars “Uptown Funk.” 

As we were getting silly, DarlaBrown and Molly Lindquist approached me, “We are SO excited to meet Coffeemommy.” I was taken aback. The tone of their voices, their eye contact and their smiles convinced me they were authentic in their eagerness and excitement and I was honored but also a little amazed. 

Feeling that I had made an impact on the very people I felt made a considerable positive impact on me was a fantastic way to close the evening. It really is all about connection. In healthcare and beyond.

As a side note, Darla captured the mini dance party via periscope but, when you’re singing and dancing with Dave video is the least of your worries, keeping up is the only thing that matters!

MedX was amazing yet I left with a sense of urgency beneath my connected contentment. In the confines of MedX, we were all preaching to the choir. Everyone who attends already 'gets it' and now the biggest challenge lies ahead - how do we take our collective knowledge, insight, passion and energies and catalyze change.

Sunday dawn broke as my friend Nichole and I drove over to the East Bay for her first ever sprint triathlon – SeeJaneTri. Nichole and I walk every week – Half Marathon Mondays – but neither of us had swum, biked or run in quite some time. To be fair, I’ve spent a lot of time pedaling but my concerns for the bike were centered around remembering how to shift, steer and brake.

Our triathlon goals were also simple:

• Don't drown
• Finish with a smile

We arrived, two nervous women in a sea of nervous women. 

On the heels of hanging with my Transformational Healthcare Twitteratti, I was well aware at the most visceral levels that we are all more similar than different so, I did what I ALWAYS do in times of stress and uncertainty. 

I talk to people. To hear their thoughts, consider their advice, share their energy. 

We met a handful of women also nervous about the swim. Just knowing that you are not alone in your fears is healing – in the cancer space, in the chronic disease space, in the triathlon space – in EVERY space. Community is inspiring, healing, motivating and comforting. 

Working off some pre-event jitters with some stink-eye.

Sunday felt like a different planet from the connected health education experience of days prior but, at the very core, it was exactly the same: we are  absolutely stronger together.