Pulling No Punches


This is excellent work by METAvivor, the sole US organization dedicated to awarding funding for stage IV breast cancer research. This October let’s take action. Let’s help fund research for the 30% of women who develop metastatic breast cancer. Did you know that metastatic disease only receives 2% of breast cancer research funding? That’s not a typo. 2%. Or, did you know that outcomes haven’t changed for metastatic patients in 10 years? Please, watch this video, all the way to the end, and if you want to make a difference this October, don’t just shop pink. Give money to organizations like METAvivor, that directly fund research for patients.

Originally posted on regrounding:

It has been a crazy and exciting month for METAvivor! We have lots of big news, and the first is our new video. As you’ve come to expect, METAvivor tells it like it is. Tell me what you think!

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What’s in it for me? Patient Engagement Healthcare Design

Stanford University’s Anesthesia Informatics and Media (AIM) lab is doing seriously innovative, cool stuff with healthcare, including offering a Patient Engagement Healthcare Design Class this fall.  Today I’m sharing some of the key learnings from Week One, appropriately named, Introduction to Patient Engagement Design. Our lecture for week one was led by Kyra Bobinet, MD, MPH from the Persuasive Technology Lab at Stanford.

social network scheme

Dr. Bobinet’s presentation focused on key stakeholders in healthcare, and “what’s in it for me?” in regards to patient engagement.  One of the underlying challenges of behavior change is that at the core, the entities involved need to clearly understand what’s in it for them or it is difficult to get a stakeholder on board. If you have ever led an adult learning session then you know exactly what I’m talking about. Describing healthcare as an ecosystem, Dr. Bobinet encouraged us to consider three key points as we followed her presentation:

  1. We are all part of the healthcare ecosystem ergo,
  2. We all have “dirt on our hands” and thus,
  3. We shouldn’t judge each other within the ecosystem because it IS possible to find incentive alignment among stakeholders.

Ultimately, engagement is about improving the health of patients and helping us all to lead healthier, more productive lives, so finger-pointing gets us no where, wastes resources, and limits possibilities.  I like this concept. Let’s examine the major stakeholders of the healthcare industry and their respective incentives for encouraging and championing patient engagement.  Here’s a summary what I learned from Dr. Bobinet’s lecture:


What’s in it for me, if I am a patient?

  1. Better health
  2. Fewer healthcare costs
  3. Improved patient experience

We learned that patients who are more engaged and activated about their healthcare have all three of these benefits, even when compared to other patients going through similar health experiences.  Data from Patient Activation and Self-Management behavior guru, Judith Hibbard from the University of Oregon demonstrated that activated, engaged patients are more likely to seek care sooner, be up to date on their preventative care measures and are more likely to have normal ranges on basic physiological measures such as weight, blood sugar and blood pressure.


What’s in it for me, if I am a hospital?

  1. Bundled Payments
  2. Risk Based Contracts
  3. Patient Loyalty

The Bundled Payment for Care Improvement Initiative is an agreement that ties financial and performance accountability measures to reimbursement, in hopes of creating better coordinated (see: quality) patient care that costs less. Bundled payment agreements result in one payment for multiple services provided.  In older payment models Medicare reimbursed a hospital for each individual care interaction that a patient had and therefore provided little to no financial incentive for care coordination or cost effective care.  In fact, older reimbursement structures potentially encourage quantity of touch points instead of quality touch points.

With the growing number of ACOs and risk sharing contracts, engaging patients makes sense for hospitals as well.  By participating in an ACO, risk is shared and quality care performance is rewarded.  The emergence of ACOs has also resulted in significant consolidation in the healthcare market.  Hospitals and providers have consolidated, providers have consolidated among themselves, and this leaves fewer players all teeing up for the same patient. This means patient loyalty is at an all time premium and hospitals must do whatever they can to activate and engage their patient population to ensure they return.

Here’s a little refresher of Porter’s Five Forces for your viewing pleasure:

Porter's five forces

Porter’s five forces photo credit: Zantus


What’s in it for me, if I am a provider?

  1. Patient Satisfaction
  2. ACO/Risk sharing reimbursement
  3. Brand Equity

Patient satisfaction is increasingly becoming a metric with which providers are measured for reimbursement, internally, and for contracting with hospitals.  For more information on patient satisfaction and its role in increasing revenue within a healthcare practice, please head on over to my previous post and scroll down to the middle.  Again as with hospitals, consolidation is a major trend in the physician market place, so building some real brand equity for a medical practice is crucial in getting new patients in the door and keeping the ones you’ve got.


What’s in it for me, if I am a payer?

  1. Employer Customers will be happier
  2. Payers bear all the risk of Risk Based Members

From an insurance company’s perspective, employers or companies are their big customers.  Insurance companies vie for the business of employers and employers pay for wellness programs for their employees.  Wellness programs are great, unless no one in the company takes advantage of them.  In that case, employers will believe wellness programs to be a waste of money.  The point of a wellness program is to ensure that patients stay healthy and avoid missing work due to illness (absenteeism) or attending work while sick (presenteeism). Both absenteeism and presenteeism have a negative effect on productivity and overall patient health. From a payer’s perspective, a patient who is up to date on preventative care and who sees the doctor sooner when they are less ill, is a less risky (generally lower cost) patient.  This lowers the risk that the payer must bear.


What’s in it for me, if I am pharma or a device company?

  1. Refill sales
  2. Desirable prescribing habits
  3. Reimbursement for devices
  4. Data

Activated and engaged patients will refill their medications.  A pharma company’s favorite patient is the patient who religiously fills their prescription every month, and pharma will go to great lengths to pay for data that allows them to track how many prescriptions filled are new vs refill. As such, it can be inferred that patients who refill also have better outcomes (assuming the medication was prescribed correctly) and as a physician sees disease improvement consistently, will be more likely to choose that prescription drug each time.  Device companies need engaged patients because they need to demonstrate their product works in order to get reimbursed by payers, and the data to demonstrate the utility of a device comes from increasing the number of patients who receive their product.

STAKEHOLDER #6: Entrepreneurs

What’s in it for me, if I am an entrepreneur?

  1. A viable business idea
  2. Revenue
  3. Helping people

Healthcare entrepreneurs are constantly trying to make real change in healthcare.  That is no easy task.  For an idea to receive funding you must show interest from the patient population you are trying to serve and most importantly, your idea must address an unmet need or be markedly better than other options available on the market currently.  Participation by patients and providers demonstrates need and that will ultimately generate revenue and funding.  I am intimately familiar with this category as a Board Member of Breast Care for Washington.  We’ve opened our doors and are serving patients.  In fact we are serving so many patients we have exceeded our strategic projections for the year.  What we need now is funding.  Lots of it.  Check us out if you are interested in funding our efforts.

There you have it. A summary of the six major players in the healthcare ecosystem and their incentives to champion patient engaged healthcare design. Underlying all six categories is the shared goal of improving the quality of healthcare and patient outcomes.  As I have said many times, I truly believe that favorable patient outcomes and business success are not mutually exclusive.  They can and need to both exist at the same time. Business needs favorable outcomes to succeed and patients need business successes that drive healthcare innovation.  That’s the crux of the ecosystem.  Everyone plays a unique role.

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Doing More with Less: Capturing Adequate Cancer Family History

Every day, oncology clinicians are asked to do more with less.  What I mean by this is, reimbursement for many services has gone down or is inadequate, and physicians are asked to do more during a patient visit with less time available. Yesterday I had the wonderful opportunity to present to a local oncology department in partnership with the hospital’s genetic counselor, regarding the importance of capturing comprehensive family history to identify patients appropriate for further cancer risk assessment and genetic testing.

When dealing with a cancer diagnosis, most patients are concerned about treating the cancer in front of them.  Many do not know that their cancer might be different.  It might be a type of cancer that is a small proportion of all cancers: it might be part of a hereditary cancer syndrome. Hereditary cancer is different and without a diagnostic genetic test, it can go misdiagnosed.

Patients with hereditary cancer carry greatly elevated risks for a second cancer, over the general population.  One might argue that cancer family history genetics hereditary diseaseall patients who are appropriate for further evaluation (genetic counseling and genetic testing), will be identified via their personal diagnosis.  While that statement is grossly inaccurate, it would be fair to argue that the type and age of a patient’s diagnosis can be a major indicator that further risk assessment may be appropriate. In many cases, however, a comprehensive cancer family history is required to determine if the patient is appropriate for further evaluation and assessment. Gathering a cancer family history might seem like a no brainer, but data suggests that gathering a comprehensive cancer family history is actually quite a challenge in an oncology setting.

The American Society of Clinical Oncology published an expert statement in March 2014 that provides a framework for identifying patients with a predisposition to hereditary cancer and how to interpret the information collected in the context of the patient’s diagnosis.  Of particular interest in the paper was the section on barriers to capturing a comprehensive family history.  Patient barriers included such items as a lack of knowledge regarding family history, small families, and fear of cancer family history information.  Physician barriers included inadequate family history sections available in electronic health records (EHR), no adoption of the American Health Information Community core data set within EHR, and cumbersome paper tracking tools.

ASCO‘s recommendations for a Minimum Adequate Cancer Family History include the following information:

  1. History on BOTH Maternal and Paternal side (Remember most hereditary cancer syndromes are autosomal dominant, not sex-linked. That means you have an equal chance to inherit a damaged gene from either parent.)
  2. First Degree Relatives Cancer History
  3. Second Degree Relatives Cancer History
  4. Each cancer case in the family history should include:
    • Age at Diagnosis
    • Type of Primary Cancer
  5. Results of any genetic testing of family members

ASCO further recommends that cancer family history is updated periodically when the oncologist and patient make key decisions about treatment and survivorship.  These points include:

  1. The end of the first phase of therapy
  2. The time of post-treatment summary
  3. Beginning of post-treatment survivorship

Updating family history is important, because one new diagnosis may be the different between seeing a suspicious pattern in a family, or that rare cancer that jumps out at a healthcare provider and leads to a hereditary cancer diagnosis.  As we roll into October, well-known for its nomination as Breast Cancer Awareness Month, I would encourage you to ask about your family history.  Write it down, and on Thanksgiving, ask again.  After all, ever since 2004, the Surgeon General has nominated Thanksgiving to be “National Family History Day.”




Patient Centered Care at the Cleveland Clinic

“Every life deserves world class care.”  How’s that for a slogan?  The Cleveland Clinic delivers again with its digital media.  You might remember their first video on empathy in healthcare from 2013, which encouraged viewers to imagine living in someone else’s shoes for the day. Today I want to share with you the latest video from the Cleveland Clinic’s empathy series, titled, Patients: Afraid and Vulnerable.  Watch what happens when the provider becomes the patient.


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Free Access to Medicine X 2014!

That’s right. You have an option to register for live, online access to a number of the sessions at Medicine X through Medicine X’s Global Access Program, September 5-7th. It won’t give you access to the breakouts, but you will get access to the conference plenary proceedings, live photos and other updates to your phone, tablet or computer.  And did I mention, it’s free? Stanford’s Medicine X conference is everything I love about what’s changing in healthcare.  It is an inclusive conference specifically designed to encourage participation and interaction.  There’s a real revolution happening in healthcare. There’s a growing focus on patient experience, and social and online platforms are now being heralded as legitimate ways to empower patients. The best part? This revolution is being driven by physicians and patients, together.  I’m registered, and I think you should too!


Global Access 2014 Medicine X Stanford


If I haven’t given you enough reason to register, let me give you two more:

  1. The IDEO workshop.  Ok, so you can’t access this via the Global Access Program, but still.  It’s IDEO, one of the most innovative, interesting and coolest companies around. If they think this conference is important to be a part of, then you should too! (Yes, I still have a crush on IDEO.)
  2. The Mascot. Medicine X has a mascot named is Zoe Chu.  She’s a French Bulldog who has a twitter page and leads walk & talk sessions at Medicine X.  Given that this blog is named PUGTATO, I need say no more. Smooshy faced dogs can teach us so much.

I’ve been talking patient experience and being your own healthcare advocate for as long as I can remember.  People used to look at me like I was crazy. “Liz, patients will just do what their doctor says,”  or “Liz, that’s just the way it is,” or “Oh, we could never do that here.”  These were all too familiar sayings I used to hear, everyday.  All that is changing as providers, industry and patients are now seeking ways to work together to improve the delivery of healthcare. Don’t get me wrong.  There’s a lot of work to do.  Patient-centered healthcare design and use of interactive technology are still not standard of care. Conferences like Medicine X hope to change this.

“Providers, industry, and patients are now seeking ways to work together to improve the delivery of healthcare.”

Improving patient experience is good for patients and it’s good for business.  When patients perceive the quality of their care to be high, they are more likely to use additional services offered by a providing institution/provider and they are more  likely to remain loyal to their provider, coming back year after year.  What may seem like a “soft” measurement, patient experience scores can truly generate revenue and profits.  In one study of 82 hospitals, a 1% standard deviation increase in perceived patient quality scores resulted in a 2% margin increase.  In fact, a 2013 benchmarking report by the Medical Group Management Association (MGMA) showed that practices that achieved “better-performing” status surveyed their patients and surveyed them more frequently.  I am also going to also infer from this statement that “better-performing” practices took it a step further, and not only surveyed their patients, but acted  on the results.  As you may remember, one of my biggest pet-peeves is asking for feedback but not acting on the results! Additionally, almost 10% of these “better-performing” practices tied some portion of physician compensation to patient experience.

I hope you take advantage of this opportunity to register for Medicine X’s Global Access Program.  Participation is what drives change.  We are all responsible to make it happen, and together we can.  If you log in- let me know!  Tell me what you liked and what you want to hear more about!

Want more? Check out these posts:

How to avoid committing PUGTATO’s Top Three Social Media Faux-Pas

Have you ever wanted to delete that Facebook post or Tweet right after you posted it?  Found your content copied and pasted on someone else’s blog or profile?  Gave permission for a reblog only to discover the link to your original work was left out?

social media faux pas blunders pugtato etiquette


One thing I have learned as I have built this blog and grown my own social media network, is that online etiquette is a skill that requires real, conscious effort.  If you have ever been the brunt of other’s online faux-pas, you know how frustrating that can be.  To help demystify how to be a courteous , contributing member of the online world, today I give you PUGTATO’s Top Three Social Media & Online Faux Pas, and how to avoid committing them.



PUGTATO’s RECOMMENDATION:  Just don’t.  ALTERNATIVE: Come up with your own or ask for permission to share the content you like.

Content comes in all forms, blog posts, profiles, websites, collateral design, brand messaging.  Creating that perfect blog post, LinkedIn profile or branding takes time.  Lots of it.  There’s a reason that you were drawn to the content of one online media over another, and that’s the hard work of someone doing research, drafting, re-drafting, throwing out the tenth draft, starting over, and finally coming up with those perfect words that draw you in. So, if you like what you see, come up with your own using what you liked as inspiration.  You will then appreciate how much effort goes into creating that perfect post, job description, professional summary, etc.

Asking for permission to share content is another alternative to coming up with your own.  If permission to reblog, or share, is granted, list the real author and include what you like about the content. After all, your readers/followers have connected with you because they are interested in hearing from you!  Add your perspective/comment to the piece and make sure to include a link back to the original work with a clear statement that you are not the author.  Don’t be offended if the author does not want you to copy and paste an entire post and asks you to just provide a summary with a link.  In WordPress this is very easily done by using the “reblog” button at the bottom of a post.  It will generate the correct link and trackback for you, while providing your page with a summary.


PUGTATO’s RECOMMENDATION: Stop, think and read before you post. ALTERNATIVE: Pretend you are on national television every time you post.  If you wouldn’t say it on national TV, don’t say it online.

YAY! Social and the online world provide a platform to voice opinions for the world to see!  Oh wait…the whole world can see.  Ya get what I’m sayin’?  My advice is to stop, think and read before you post. Don’t post when you are angry, tired, or under the influence.  You know that driving while intoxicated is dangerous, so is posting online.  While deleting that tweet, Facebook post, link share or blog post might seem like an easy quick answer, there is this thing called cache, and it saves permalinks.  Many times this means your post lives on, for a while, after you delete it.  Just ask some of the people who lost their jobs over one bad post.  It happens.


PUGTATO’s RECOMMENDATION: Say thank you.  Say it a lot.  ALTERNATIVE: Say thank you more than you think you should.

Social communities thrive on participation.  They are, in fact, social.  When someone stops by your blog to read, thank them.  When someone shares your post, thank them again.  When you get a retweet, thank that person too.  When someone takes the time to read and comment on your work, comment back, thank them.  Get the picture? When social becomes a one way street and you push out content without acknowledging your readers, two things happen: 1) you run the very real risk of losing reader engagement, 2) you’ve lost sight of the purpose of social media.  You might as well just stand in front of a mirror and talk to yourself. Another way to say thank you is by reading other people’s work!  Search around for some blogs you like and actually read them after you hit follow or subscribe.

Those are PUGTATO’s Top Three Social Media and Online Faux Pas.  Remember, you are what you tweet, so be nice.  Don’t be a twerp.  Tell me… What’s the biggest social media faux pas you have experienced?

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Help! School is turning my child into a french fry!

Or that’s my fear, anyways.

We have always been healthy eaters and I thank my parents for raising me on vegetables and balanced meals. A couple of years ago my husband and I watched Jamie Oliver’s Food Revolution and we were horrified to see the awful food children are being fed in our school systems. When Jamie came back for season two, well, lets just say that the US public school system was not ready to welcome him and the season was a flop. Schools appeared to be focused on one thing- doing the bare minimum to get “nutritious” food to our children all while getting the cheapest, most processed food available.  Saving on the bottom line now is only going to cost our future generations more in the long run as diabetes, cancer and heart disease all plague our population.

I’ll tell you one thing.  We don’t eat like that at home, and I would not want my child to have processed or sugary foods as her only healthy school luncheschoices for eating.  (Yes, I hear you nay-sayers, I can pack a lunch. And I will, when that time comes.)  In a world where the government considers pizza a vegetable , and where a third of our population is obese, it is time to look in the mirror! You are what you eat.  So, if you eat pizza and french fries every day, well, 1+1=2, if you know what I’m saying.

My beef with school cafeterias goes all the way back to my days as an elementary student.  Yes, you read that correctly.  My elementary school decided to use disposable trays, and as a 4th grader, I decided to start the Jr. Environmentalists League, which refused to throw away trays and started spreading the word about recycling and saving the planet.  You might say that I irritated many a cafeteria worker that year.  I happen to be pretty persistent. Especially about causes that I believe in.

Today I’m asking for your help to team up with Real Food for Kids Montgomery, an advocacy group that wants our children in Montgomery County, MD to have healthy, REAL food options.  Currently kids can get a chocolate milk and a cinnamon bun for free in their classroom.  I can’t believe that is even true. (Someone please tell me I’m wrong.  This is just what I have been told.) Real Food for Kids has done great work helping our local schools to start to make changes to remove additives from some foods our children are offered, and to increase transparency about what our children are being offered as choices.  Many parents are not happy when they learn about the wide availability of processed salty or sugary snacks available to kids.  Real Food for Kids wants to help Montgomery County Public Schools to increase healthy choices like vegetables, fruits and water.  Instead of pre-cooked, reheated processed foods, RFKM aims to get fresh cooked meals on the plates of our kids.

Real Food for Kids Montgomery will be testifying in front of the Board of Directors of MoCO PS June 3rd in Rockville, MD and presenting a petition in support of their cause, no scratch that, our children’s cause.  Please take a moment to read the petition and sign it!  Even better, if you can attend, do it!  For more information please email members@realfoodforkidsmontgomery.org.  If you want to testify use this email realfoodmcps@gmail.com.  If you can’t do either, please share this post so others know what is happening.

If you need some additional facts here are some from the petition:

  1. Currently one-third of all American children are overweight, and of that group, approximately 17% are obese. Since 1980, obesity prevalence among children and adolescents has almost tripled(1), leading to a lifetime of chronic illnesses. If this trend continues, one-third of all children born in 2000 or later will suffer from diabetes at some point in their lives(2).
  2. In Maryland, the prevalence of diabetic adults has grown from 6.8% in 1999 to 8.7% in 2008, which continues to be above national levels(3). In addition, there are significant racial and ethnic disparities. Black females (12.5%) in Maryland have almost double the diabetic rates of white females (6.8%)(4).
  3. Nationwide, 40% of children in African-American and Hispanic communities are suffering from overweight or obesity(5). Given a growing body of research that suggests that obesity is associated with poorer academic performance beginning as early as kindergarten(6), this could help explain some portion of the achievement gap.
  4. Within MCPS schools, many a la carte and vending items sold are high in sugar (note: the American Heart Association recommends that children ages 4-8 consume no more than 3 teaspoons and pre-teens and teenagers consume no more than 5-8 teaspoons of added sugar daily)(7). They also contain ingredients found to be less than safe by the Center for Science in the Public Interest(8). Often, students will select and eat these items instead of fruits, vegetables, and meals. In addition, most of the foods served in MCPS meals are processed and contain additives, some of which have been shown to cause cancer, hyperactivity, and other behavioral impairments in children(9).”

We are lucky in Montgomery County, MD to have some of the highest rated public schools in the country.  This is MoCoPS’s opportunity to take a leadership role in revolutionizing the way our children are educated and fed.  It certainly won’t happen over night, and it won’t happen with out an internal champion.  Change is never easy.  Change for the right reason is always good.  Let’s do this MoCoPS.  Let’s show the rest of the country how we revolutionized school food and taught our children healthy habits for life.

more fruits and vegetables in montgomery county maryland schools

But you’re too young to have cancer…right?

Famous last words. Today I want to share with you the story of my college roommate’s sister.

Kearsley Lloyd has everything that any young woman would want.  By the age of twenty-six she had launched her own successful business, The Tipsy Skipper, and was doing what she loved: designing gorgeous fashion inspired by a sea loving, New England lifestyle.

Kearsley was also diagnosed with Melanoma. Twice.

Kearsley reminds us below, that you have to be your own champion when it comes to your health- even if that means making things uncomfortable, because that uncomfortableness may just be what saves your life.

Be persistent because your life may quite literally be at stake! If I had listened to two dermatologists, I would very likely have lost the chance to celebrate my thirtieth birthday. While insisting upon a biopsy made for some awkward moments and an irritated doctor, it was the difference between metastatic cancer and the urgent treatment I needed to save my life.

Kearsley’s story and her message are an important reminder to get your skin checked and that cancer does not discriminate.  It doesn’t care how old you are, what your gender is or what your race is.  It doesn’t care if you went to college and fulfilled your dreams afterwards.  It doesn’t care what you have planned for your future.

I encourage you to head on over to Kearsley’s blog so you can read her full story, in her own words, and share it with your family and friends.

Many thank you’s to Kearsley Lloyd for allowing me to share her story today.