Top Cancer Genetics Programs to AARP: Medical Interventions extend the life of BRCA carriers

Healthcare misinformation leads to fear, avoidance and worse medical outcomes for patients, even if intentions were good. Unfortunately, a lack of knowledge and poor editing led to a published article by AARP that has produced great outrage among BRCA carriers, patient advocacy groups and the physicians who work tirelessly for these patients.

Today I want to follow up from my previous post and share with you a letter that demonstrates how unified the healthcare community is in opposition of AARP’s article. FORCE, the only national patient advocacy group dedicated to Hereditary Breast and Ovarian Cancer Syndrome, wrote a letter to AARP, and for me, the best part was the end.  After debunking nearly all of the statements made in the AARP article with fact, the letter was signed by numerous top cancer genetics programs, breast imaging centers and hospitals in the United States.  The signatures from world renowned healthcare institutions runs over two pages long.  I encourage you to take a look and see for yourself. FORCE’s letter to AARP can be found here. I would also like to sincerely thank everyone who read, wrote me and shared my latest post on the importance of recognizing that celebrities are not doctors. I am truly thankful and humbled every time a piece of my writing resonates with someone else.

Missed opportunities: celebrities are not doctors.

One of the most challenging parts of my job is the misinformation that surrounds hereditary cancer and the celebrities who add to the problem.

Celebrities have a large platform from which they can loudly and publicly share their views.  Often times fans and the general public take celebrity views as scientific, medical truth.  Case in point is Jenny McCarthy and her personal contribution to bringing back preventable diseases like measles and mumps, even though she now admits her son was misdiagnosed, doesn’t have autism and does not believe the vaccinations he received were harmful.  The CDC has gone so far as to call her a “Menace to Public Health.”

Everyday I am behind the scenes helping patients and families at risk for hereditary cancer. I am witness to young patients diagnosed with aggressive disease. I am witness to patients that are not offered hereditary cancer testing after a first cancer diagnosis and who are back again with a second cancer.  My goal is to do whatever I can to prevent that second cancer from happening and provide answers for these families.

Recently AARP published an article titled, “Sheryl Crow and Melissa Ethridge Beat Cancer and Heartbreak: Lessons for all of us.”   This article appeared in the Health and Healthy Living section of the magazine and had a short picture infograph containing each woman’s belief on why she got cancer, how she could have prevented it, how she believes she got rid of it, and her mantra for going forward with life. The full article depicts two truly incredible women having overcome personal challenges, medical challenges and rising to the top to continue their successful careers.  To me, that’s inspiring.  I find their ability to overcome adversity really powerful. Unfortunately, the article was somewhat of a miss, as well.

Melissa Ethridge is a BRCA carrier, which means she had hereditary breast cancer. While we are all entitled to their own opinions, this article claimed to include “lessons for all of us,” and I would have anticipated better scientific fact checking and editing by AARP before publishing. Opinion does not equal fact.

The picture at the end of the article was so full of misinformation that fellow BRCA carriers and other breast cancer patients were outraged and took to social media to let their voices be heard. In healthcare, misinformation is hurtful and dangerous.  It makes patients confused and upset.  It makes physician’s jobs even harder.  In this case, it means more patients may miss the opportunity to make informed decisions.

Let’s look at some of the false information in this article.

Ethridge: “I have the BRCA2 gene, but don’t encourage women to get tested. Genes can be turned on or off.  I turned mine on with very poor diet.”

FALSE. Ethridge’s statement is wrong on many levels. 1) Everyone has two copies of the BRCA2 gene.  One from mom and one from dad. In fact, everyone has two copies of the BRCA1 gene, too.  2) If her BRCA2 gene was theoretically “turned on” it would actually be protective against cancer. 3) When a patient has an inherited BRCA mutation it is present in every cell of the body and puts patients at dramatically increased risk for cancer.  Cancer in these patients does not occur because a patient ate gluten, sugar, red meat and dairy, as Ethridge later implies.

BRCA1/2 are tumor supressor genes that when working properly (turned on), act to protect your body against developing cancer. When a patient receives BRCA genetic testing we are looking for changes in the genetic code on BRCA1 or BRCA2. These changes are called mutations. Germline mutations are passed on at birth and can be passed on from either mom or dad.  Mutations in either gene cause it to stop functioning properly and confer an elevated risk for primary and secondary cancers over the general population, including up to 87% lifetime risk for breast cancer and 44% lifetime risk for ovarian cancer.

When we talk about BRCA, the syndrome is called Hereditary Breast and Ovarian Cancer Syndrome (HBOC), and it also includes increased risk for pancreatic, prostate and melanoma cancers. Keep in mind, harboring a mutation does not mean a guaranteed diagnosis of cancer during one’s life.  It does, however, mean risk is greatly elevated.  Inherited germline mutations from mom or dad are generally the cause for cancer in these families and the only way to diagnose a patient with Hereditary Breast and Ovarian Cancer Syndrome is to offer risk assessment and hereditary cancer genetic testing. (It is possible for patients from families with known mutations to develop cancer but test negative for the family’s mutation.)  In Ethridge’s case, she has a known mutation.  We know what’s causing her cancer and it’s not diet.

Certainly testing is a personal decision, some patients will not pursue it and some may regret finding out the information afterwards. That’s what genetic counselors and physicians are for. They are there to help patients through the informed consent process and to understand the ramifications of testing. When patients are given accurate information they learn that a diagnosis of HBOC means they have an elevated risk for cancer and most importantly: they can do something about it.

Hereditary cancer is different. Standard of care guidelines published by the National Comprehensive Cancer Network clearly state that management of patients with hereditary cancer syndromes should be different and more aggressive through increased screening and/or surgery. For HBOC patients, studies have shown that the risk of a second primary breast cancer in their lifetime is up to 64% and developing breast cancer first does not rule out the ovarian or other cancer risks associated with this syndrome. Diet doesn’t cause cancer in these patients.  Diet doesn’t turn a BRCA gene on or off.

As a patient, wouldn’t you want the most appropriate care for your cancer diagnosis? Unless Melissa Ethridge has received a medical degree, telling patients they shouldn’t test and that eating healthy will prevent/cure hereditary cancer is irresponsible.  I’m not suggesting that eating healthy is not a great idea.  It is! However, when it comes to preventing BRCA related cancers, all the kale in the world cannot change the fact a patient has an inherited germline mutation that puts them at a dramatically higher risk for cancer than the general population.  Period.

There are great resources for patients and families who want to learn more about Hereditary Breast and Ovarian Cancer Syndrome.  Here are a few to consider:

  • My Support 360: Comprehensive information about Hereditary Cancer Syndromes and testing process written for patients.
  • Bright Pink: The only national nonprofit dedicated to early detection and prevention of breast and ovarian cancer in young women.
  • FORCE: The only national nonprofit dedicated to HBOC patients.
  • #BRCA Bi-weekly Tweet Chat, Thursdays 6 PM PT/9 PM ET.

I see this article as a missed opportunity. The fault is not solely with the celebrities, but also with AARP choosing to ignore that opinion is not fact. It is a missed opportunity for AARP to use two well known celebrities to share factual, valuable information about hereditary cancer and risk assessment.  If Melissa Ethridge truly believes that her alkaline, sugar free diet cured her cancer that is her opinion to have.  Perhaps it gives her comfort and peace of mind to believe she is controlling her risk that way, and if so, that’s great. I believe that feeling empowered is important for all patients and that empowerment comes in different forms.

However, it is irresponsible to publish articles that claim unscientifically supported statements are lessons for all. Furthermore, I am reminded of how much work we have to do in educating the general public about hereditary cancer. Patients who have BRCA mutations have them whether or not they are tested. They carry elevated cancer risks whether or not they are tested. Patients deserve to know the facts, the REAL facts, and that’s why I’m reminded that our work will never be done.


The Cost of Not Doing: The Neuroscience of Engagement

This week we’ll do a very basic overview of how underlying brain structures and biochemistry shape the way we behave to better understand why we don’t always do the things we should do, related to our health, even when we know we’re making suboptimal choices.

I know you’ve been there.  You have the choice between an apple or a slice of apple pie.  You choose the pie.  You tell yourself, you’ll walk the dogs an extra 30 minutes or you’ll choose the apple next time.  It all cancels out then, right? Wrong.

Neurobiologists like David Eagleman of Baylor University suggest that our unconscious brain does most of our decision making, that there is a gap between what information is available to our subconscious and our conscious selves. I find the idea that we use only a small proportion of our brain and available information a hard concept to wrap my head around.  It seems a little overwhelming!

To understand this a little better, our brain activity was framed up as the following: Imagine that you were trying to process every single piece of news that is happening in the United States on one given day. Every story. It would be impossible to process all that information, and so we read newspapers and watch the news to get headlines that summarize and categorize what is most important. (OK, the most important part is debatable these days.) Mr. Eagleman suggests that we consciously act on ‘headlines’ from our brain’s subconscious.

Because the human subconscious drives our actions, instead of making decisions in a completely rational way that delays gratification, ignores emotion and is unswayed by influence, we often make suboptimal choices.  We are flawed. Humans love immediate gratification, we ignore consequences, we are swayed by emotion, we are influenced by branding and cultural norms, and we can’t be counted on to behave consistently.  Given all these facts, it’s a wonder we make it through the day.


We spent some time on the idea of making ‘Deals with the Devil.’ This is the concept of getting something now knowing there will be consequences later.  In these situations the consequences are so far down the road, so delayed, that you don’t really care about them right now.  The official term for this scenario is a Ulysses Contract. In a Ulysses contract, we make a deal with ourselves to constrain our future behaviors. patient engagement neurobiology medx

Here is a great example of the present me trying to hold the future me accountable to do something good for my health. Remember that 30 day Abs challenge that was posted to Facebook a few months ago? It seemed doable.  The challenge was a finite amount of time, someone had already laid out the exercises for you to do, and there were videos explaining each move.  What more could I need?  I had really good intentions to do the challenge and said to my husband, “I’m doing this, no wait- WE’RE doing this. Make sure I do this with you every night after the baby goes to bed. Don’t let me say no.”  Well, 5 days in and I was too exhausted, or I had work to do, or I just didn’t feel like it, or I figured I could just make it up tomorrow.

This type of scenario is all too common, and yet, I would consider myself an engaged patient.  I take active steps to ensure my family and I eat healthy and live an active lifestyle.  I’ve even been accused to being too over zealous about my need to shop at Whole Foods even though our closest store is 25 minutes away.  (That, by the way is a great example of being engaged and committed.)  When it came to this ab workout situation, however, I wasn’t engaged.  There was no consequence of not doing the challenge in the near future.  Nothing to hold me accountable in the public eye, nothing online the line.


Our beautifully flawed existence can make it difficult to choose the ‘right’ decision, and is the very reason that patients frequently just do not engage. Having good intentions is simply not enough to ensure that you’ll do the right thing.  Mr. Eagleman provided five strategies to decrease the likelihood of non-engagement .

MINIMIZE TEMPTATION. Examples of this might be alcoholics who do not keep alcohol in the house or healthy families that don’t keep processed foods in their cupboards.

PUT MONEY ON THE LINE. Make a cost associated with not doing.  We all know that there are thousands of people around the US that have paid gym memberships that go unused. (Good intentions, bad decisions.)  Some gym companies are betting on you to make bad decisions and offering to pay for your gym membership if you use it ‘X’ number of times per month.

Another really neat health initiative that’s knocking it out of the park with patient engagement is Stickk.  Stickk lets its users make contracts with themselves and build support networks to reach personal health goals. Users sign up for Stickk and choose any goal they want: lose 10 lbs, stop smoking, run 3 miles every day, etc. Stickk incorporates social networking so its users have a community of participants to cheer them on and hold them accountable. In addition, Stickk makes users put some cash on the line that will be charged if the goal is not completed.  Now here’s the really cool part.  You choose how much money you want to put on the line and you choose a charity or cause that the money will be donated to if you do not complete your goal.  When I looked today there was $19 million dollars on the line from over 268,000 goals.

RECRUIT SOCIAL PRESSURE. Stickk is a great example of recruiting social pressure to help patients reach their health goals.  It’s harder to back out of a workout when you have a giant online community waiting to hear about your results.

INVOLVE EMOTION. Well, this one is a no brainer.  Emotional investment into any cause will help drive engagement and action. Healthcare marketers, providers and institutions must tap into this for successful patient engagement.  As I mentioned in my post last week on design thinking for patient engagement, deep understanding and empathy for the patient journey is critical to creating products and services that truly engage patients.  For more on this, head back to last week and take a look.

ESTABLISH RULES.  I think this one kind of goes along with the social pressure.  Setting rules is easy to do, but they are not always easy to follow when it comes to health because of the complicated, intricately designed human brain.

I found this week to be a very interesting, new perspective on patient engagement.  I had some flashbacks to my psychology classes at Bucknell, and it also was a stark reminder of how much we have left to learn about the human brain.  As we wrap up here today, can you think of one way that you could incorporate the five strategies for engagement?


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Design Thinking for Patient Engagement

Design thinking.  It’s the “it” buzzword these days, but what does it mean for healthcare and patient engagement?

Design thinking is human centered. Design thinking is synonymous with the firm IDEO, a global design consultancy.  Week three of Stanford’s Patient Engagement class was “Design Thinking for Patient Engagement” lead by Dennis Boyle.  Mr. Boyle is a founder of IDEO and heads up their Health and Wellness practice. IDEO’s health and wellness practice focuses on innovations that encourage healthful behavior changes.

I was really excited about this week, as you may remember that I have a (slight) crush on the work IDEO does. We learned that design thinking, the IDEO way, is a human centered approach to innovation, using empathy to understand people’s needs on multiple levels including: social, cognitive, emotional, physical, and cultural. To do this, Mr. Boyle’s teams apply these four principles:

  1. Develop empathy for your user by understanding their journey.
  2. Doing is believing.  Always have a bias towards action.
  3. Solicit feedback from your users in the short term and long term.
  4. Engagement is social, it is contagious.

In order to facilitate change, there must be belief from all users. Design thinking projects at IDEO always start with an open ended question, including:

How might we…..?

What if…..?

What is the future of……?

Taking a human point of view is critically important in healthcare, as demonstrated by the story of Leilani Schweitzer.  Ms. Schweitzer is a mother whose child was lost at 20 months old because the medical technology that was saving her son’s life failed to incorporate the most important factor: the human factor.  I’ve scoured the internet to try and find you a video of Leilani’s story from this year’s Medicine X conference. It is not posted. Her story was so gripping, so intense, that when I watched her tell it live, I realized I wasn’t breathing.  When it was over, I felt sick.  You can read the text of her talk from Medicine X on her blog, Not With Great Frequency. I am, however, able to share with you a different video of Leilani’s story from a TedX talk last year.

All this talk about patient engagement and healthcare delivery is not just wordplay.  It’s not just a fad. Designing healthcare with a human point of view is not a a fluffy marketer’s concept. At its core, patient engagement is a real initiative seeking to change the delivery of healthcare and to make patients prime stakeholders. To have real patient engagement we have to listen to patients.  (If you haven’t clicked through to read Leilani’s story yet, here’s another opportunity to click through to her story.)

You may remember my previous posts on some experiences I had in the pharmaceutical industry where asking “what if” was seen as insubordinate, where “what if” was a dangerous, negative question.  I am happy to report that since I left that industry four years ago, there seems to be some improvement in this mentality. One example of this would be the Lilly COI lab, which was created on the premise that the drug development process must improve.  It must become more open, and patients are needed to help make that happen.

I’ll share with you a summary of one of the patient engagement design stories Mr. Boyle highlighted that really resonated with me because it had a personal impact on me for a number of years. Ever heard of Forteo?  Forteo is a legitimate wonder drug for patients with severe osteoporosis.  In our world, we would talk about patients with t-scores less than -2.7.  T-scores measure a patient’s bone density and are used as a gauge to determine whether a patient has normal bone density, osteopenia or osteoporosis.  How the heck do I know anything about t-scores and osteoporosis?  Forteo was my baby for years at Lilly.  It was one of the products I launched during my time there and is a product I would still be proud to carry today.

Here’s a little biology background before we go further.

While you are alive your bones are constantly in a state of turnover: a process of rebuilding and resorption (removal).  (Kind of like how your DNA is constantly repairing itself, too.) Antiresorptives like Fosamax, Actonel, Boniva, and Reclast all work by reducing the biologic activity of osteoblasts (bone building cells) and osteoclasts (cells that resorb or remove damaged bone) to reduce bone turnover.  In normal bone, these cells work together as an important checks and balance system.  You don’t want too much or too little activity of either kind. When women hit menopause a lack of estrogen slows down and decreases the number of the osteoblasts and the checks and balance is thrown off leading to “osteoclasts gone wild,” and for some women, osteopenia/osteoporosis. (Not too shabby on the recall for not having had this conversation in four years, if I do say so myself.)

Forteo is the only osteoporosis medication on the market that builds new bone mass. Forteo is not an antiresorptive, it is a biologic injectable that actually stimulates new bone growth. Forteo is a daily injectable that is taken for two years, at which point a patient then goes onto an antiresorptive to maintain the bone they gained. The antiresorptives and monoclonal antibodies available on the market today all increase bone density, which means they make the remaining bone you have more dense, but no new bone is gained, despite how their marketing is interpreted by many physicians and patients.  I’m looking at you, Sally Field.

Biology class, over.  Now, back to my design thinking story.

Osteoporosis can be a debilitating disease yet compliance with medication is not good. Here’s a visual what Forteo does:

Forteo patient engagement IDEO


That is the iliac crest of a real patient treated with Forteo. Her starting t-score was about -2.7.  If you were a patient with severe osteoporosis wouldn’t you want the bones on the right?  If you were a physician wouldn’t you want your patients to have the bones on the right?  I would!  Remember, no new bone mass is gained with antiresorptives.  All that happens is the remaining structures become stronger, more dense. To grow new bone mass, Forteo is the only option out there.

We carried actual plaster cast versions of these bone models everywhere in the field.  I had bone models in my purse, my sample bag, falling out of my car and crumbling (maybe her t-score was a -3.5 on some days due to the fracture she suffered as I got out of my car.)  I demonstrated how “easy” it was to inject oneself by using our sample devices filled with saline to actually inject myself during product demos. (Yes, I used alcohol swabs and real sterile BD needles and carried a sharps container around with me too.)  For someone in their 20s with no arthritis, a tiny needle and an eight step process was no big deal.

The reality was 80 year old women with arthritis and other issues had a really difficult time using the delivery device. It didn’t matter how great the science was because they couldn’t use it.

If the proof is in a visual, then everyone should have been jumping on Forteo.  But they weren’t. The science was great, (of course patients will do this, show them bones!), but the delivery did not have empathy for the user journey. This product asked 80 year old ladies to use a delivery device with eight steps including priming, injecting and twisting a difficult dial.  The reality was 80 year old women with arthritis and other issues had a really difficult time using the delivery device. It didn’t matter how great the science was because they couldn’t use it.

IDEO worked with Lilly to radically redesign the device, eliminating the priming and dialing, and reducing steps to inject to two.  This device was well received and Forteo saw real up-tick in the osteoporosis market.  After all, if a patient can use the device easily AND get new bone, well then, it becomes a different story.  Also, I no longer had to inject myself to prove that it was easy and the needle was not scary, so that was a plus.

When the Forteo example was shown during our class I almost fell out my chair because it was such an “ah ha!” moment for me. I wish I could have shared my story with the class, but it was a recorded lecture. At the time I was selling Forteo I had never even heard of design thinking or IDEO.  It never would have crossed my mind that such a complex, human focused process would have gone into the redesign. We were told patients helped to design the new delivery device and now, years later, I really understand what that means. I had always figured a bunch of engineers sat in a lab and just came up with it, which leaves me with my final thought on this topic.

At the beginning of this week’s class we were asked what design means to us, and here was my response:

Design, to me, is creating an experience or a product that seems effortless to the end user.


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.”