How to create a Healthcare Social Media Strategy: Part 1

Creating a formal social media strategy and policy is important for all organizations.  Healthcare organizations face unique challenges in communicating over social media, but that does not mean social should be ruled out as a communication and marketing strategy.  In fact, healthcare organizations that use social media are seen as more cutting edge and more patient friendly to consumers than those that don’t. If you are a marketing manager or a communications strategist building a social media strategy for your healthcare organization, this post is for you.  Welcome to my three part series on how to create a best-in-class healthcare social media content strategy.  This series provides real world recommendations and industry best practices for developing a strong healthcare social media strategy that can be implemented immediately.

Recently, I wrote Breast Care for Washington’s Social Media Handbook using best practices and tips I’ve picked up along the way from colleagues, Stanford’s Medicine X,  and the Society for Healthcare Strategy and Market Development. As I worked through the pieces of our strategy and actually put them to paper, I thought others might find this thought process helpful. Part one covers the building blocks of a social media strategy and provides direction on how to build a strategy from the ground up, (or revamp your current strategy) including:

  1. The purpose of a Healthcare Social Media Strategy Handbook
  2. Creating your organization’s social media goals
  3. Defining a Brand Voice
  4. Using an Editorial Calendar

Part two focuses on content strategies for Facebook and Twitter and paid promotions. Part three focuses on social media crisis management and includes a daily social media to-do checklist that any healthcare organization can adopt, plus an editable template for your organization’s social media strategy handbook.

Over the last couple of years healthcare social media has become increasingly mainstream, particularly among rare disease and specific disease state patient groups.  Patients use social media to learn how others cope with disease, to connect with others going through similar experiences and to gather information, among other uses.

Healthcare organizations use social media as an opportunity to gain real time information from patients, including feedback and preferences that help in tailoring marketing messaging.  Healthcare organizations also use social media to establish a service line or institution as an industry leader.  What was once a broadcast blast-it-out style marketing, healthcare marketing must now include patients in the process in order to be successful.  Noteworthy driving forces of this change include industry consolidation, consumer driven healthcare plans and a thriving patient engagement movement.

The purpose of a Healthcare Social Media Strategy Handbook is the following:

  1. Understand the purpose of your organization’s social media use
  2. Define the brand voice of your organization
  3. Create an editorial calendar and explain how to use it
  4. Create a content strategy for each social media platform your brand intends to use
  5. Define a social media crisis management policy
  6. Leverage paid promotions on social networks

Step One: List out all the major business objectives your organization could achieve on a social network.

  • Examples: sharing information, promoting services, increase traffic to organization website, gather customer information for future marketing efforts, learn about customer preferences

Step Two: Choose your organization’s social media priorities

  • Example: For 2015, Breast Care for Washington’s social media priorities are
    1. Build brand awareness so patients are aware of our services
    2. Build credibility as a best in class breast cancer screening services provider
  • These priorities are much different than our goals from 2014, when we were focused solely on raising funds to be able to open our doors and offer services.  This highlights the importance of integrating social media strategy with the over arching goals of an organization.   Messaging and goals must align.

Step Three: Define a brand voice.

Brand voice has a tone, a character,  a language and a purpose.

  • Tone: Will you communicate your content with an authoritative tone, a scientific tone, a personal tone?  Are your posts more like a conversation and less like a formal presentation?
  • Character:  Similar to tone.  Do you seek to inspire?  To inform?  To teach?
  • Language:  What words will you communicate your information?  Will you use industry terms?  Lay person terms?  Will your audience understand what you are posting?
  • Purpose: Are you attempting to engage, educate or sell your audience?

In choosing all these parts of a brand voice, it is important to keep the brand voice consistent across all platforms.  That means your brand sounds the same whether it’s tweeting 140 characters on twitter or posting a status on Facebook.  Consumers should interact with the same voice, regardless of the social media platform.

Reviewing all posts before they go live is important.  Having more than one person read them is important.  One misused hashtag and it could spell disaster for your brand, which we will discuss later in social media crisis management.

Step Four: Develop an Editorial Calendar

An editorial calendar is a tool that is used to organize social content. It helps with social media content planning to ensure that your brand always has content to post and that your brand is not repeating the same content over and over.  Editorial calendars are also a great place to track what content resonated with your audience, and what content needs to be better tailored to fit your audience or eliminated all together.  In the social media industry, we call this Key Performance Indicators (KPI).  KPIs include but are not limited to:

  • click-throughs to your website,
  • number of patients filling out your survey,
  • number of customers inputting data into a field,
  • number of likes, shares and comments.
  • Other engagement KPIs might be the number of retweets, mentions and replies a piece of content gets on twitter.

Finding an editorial calendar you like for your brand might not be easy.  There are great free editorial calendars for download that you can modify to fit your needs.  It’s important to determine the following information as you build your editorial calendar:

  1. Who will contribute to the content creation and editorial calendar?
  2. How many times a week will your organization post?  This will vary per social platform.
  3. Do you have the capacity to respond to patients in a timely manner, based off of the number of times your brand will post?
  4. Who will give final approval to postings?
  5. Do replies need approval before posting?
  6. Are your postings optimized for search engine optimization (SEO) opportunities?
  7. What holidays (domestic and international if applicable) will your organization post about?
  8. What upcoming events or services provided by your organization will be posted about?
  9. Are your posts HIPAA compliant? If no, do not proceed with the post.
  10. Have any patients mentioned in the post given consent for their information (name, event and service) to be included? Is documentation on file? If no, do not proceed with the post.

As you create your organization’s editorial calendar, it is important to remember that social media is social, and that responding to patient responses in a timely, professional manner, whether they are positive or negative is crucial for your organization to build credibility and an audience that is engaged.

Research has shown that organizations and brands that only sell to their audience are seen as less credible and less trustworthy than their counterparts.  Keeping this in mind, a best practice of social media strategy is to keep promotional posts to no greater than 25-30% of all posts.  While that might seem low, if all a brand does is shove their products down an audience’s throat, that brand can expect low engagement, or worse, unfollows and “hides” or “mutes” in their follower’s newsfeed.

To give you an idea of a social media algorithm that keeps promotional activity to 30% or less, here’s what we are throwing around right now at Breast Care for Washington:

  • Monday: Motivational Monday Quote (AM post), BCW related post (PM post)
  • Tuesday: Post about BCW services. Scientific Journal Article (PM post)
  • Wednesday: Great achievement in breast cancer (AM post), Funny post about going to the dr (PM post)
  • Thursday: Healthy foods for breast cancer patients/prevention, BCW related post
  • Fri: Fun activity happening this weekend in DC (AM post), Funny Meme (PM post)

The benefit of having an algorithm is your content creators (your producers) know what to look for, know what to create, and can fill the calendar in advance.  Keep in mind this algorithm should not be set in stone. As you track your KPIs you can see what types of posts, what type of language and what platforms are driving your success allowing you to tailor your messaging and content for future posts.

Taking time to plan and carefully develop an organization’s social media goals and editorial calendar will result in a sustainable social media plan that increases audience engagement, drives patient loyalty and increases revenue.

 

World Cancer Day: “Not Beyond Us”

Greetings from Las Vegas, NV!  PUGTATO is on travel this week and this is a quick post to tell you about a wonderful global event taking place today. (Sorry East Coasters, I know the day is almost over. The time change caught up with me!) February 4, 2015 is World Cancer Day.  World Cancer Day is an initiative led by the Union for International Cancer Control (UICC), which aims to reduce the global cancer burden, promote equity among cancer patients and put cancer control front and center on the global health agenda.  Founded in 1933, over 800 organizations spanning 155 countries are a part of UICC.

Every year cancer kills millions of people.  8.2 million to be exact.  What’s even scarier is that half of these moms, dads, brothers and sisters, aunts and uncles, are between the age of 30-69.  Cancer is a global crisis.  Deaths from cancer are expected to reach nearly 13 million per year without global commitment to changing patient outcomes.

World Cancer Day is an awareness campaign that shows each of us how we can contribute to reducing the global cancer burden.  Yes, that’s right, individually we can make a difference.  World Cancer Day also provides a show case for cancer solutions at all levels: institutional, provider, governmental.  It puts the spotlight on solutions that are working across the cancer patient circle of care and across many different cancer types and strives to directly impact solutions that we have not yet discovered.  World Cancer Day shows us that working together, we can make a difference.  Together, reducing cancer deaths is “Not Beyond Us.”

world cancer day, pugtato

This year World Cancer Day’s message focuses on four key components:

  1. Choosing healthier lives
  2. Delivering early detection
  3. Achieving treatment for all
  4. Maximizing quality of life

For more information please visit worldcancerday.org, and follow the movement online using hashtag #WorldCancerDay and/or #NotBeyondUs

 

An Open Letter to Oncology Sales Professionals

Congratulations.  You made it. You have become part of an exclusive club: you are an Oncology Sales Professional.

Most likely, you’ve been in medical sales for a while.  You knew you always wanted to be in Oncology.  You enjoy a more clinical sale, you are not afraid of a challenge and you are over being a lunch time caterer.

I’m with you.

Many of us in Oncology have Master’s Degrees, M.B.A.’s, Nursing Degrees, etc., and really interesting backgrounds.  Because of this, I like to think that I’m working among the best in the industry.  If you’ve worked in Oncology then you know, the most experienced, best clinical people work in Oncology sales.  Nobody gets an Oncology job as an entry level sales rep out of college. Charles Charles would never make it here.

I welcome you to our small circle.  The group of people who wake up at 5 AM to truck on down to tumor board, the people who know that waiting 24 hours to respond to a client email is totally unacceptable, the people who know that you may be working a patient case on the weekend. Welcome.

Now, let’s talk about The Rules.

KNOW YOUR STUFF.

I’m a student of my craft.  And by craft, I don’t mean sales.  I mean being a clinical resource. When I joined the Oncology world about five years ago I studied, a lot. I also listened a lot; more than I spoke. Being new in Oncology is the proverbial “drinking from a fire hose.” Oncology comes with its own language, and the only way to learn it is to listen, to study and to practice.  Five years later I still study.  I read: All. The. Time.  That comes naturally to me- I’m interested in knowing a lot more than just my products.  If reading and exploring beyond your product doesn’t come naturally to you, I encourage you to set up time at least once a month where you read the latest and greatest in oncology or your tumor space.

Detail pieces are great…. but knowing more about your product in the context of a bigger oncology picture is better, and more important.

If you saw my inbox each morning with the number of industry alerts I get you might think it’s a little bit much, but it also means I’m on top of my game and I’m up to date on more than my product. My best moments on the job are when my clients stop me in my tracks and say, “wait, what is your background, how do you know all this stuff?”  It’s in these moments that I know I’ve proven myself as a clinical resource.  I strive to separate myself from the pack this way and it works.  Detail pieces are great…. but knowing more about your product in the context of a bigger oncology picture is better, and more important.  In this way you can add value.  In this way you can partner with your clients.  Do us all a favor and raise your game.  Study your tail off.

Here’s an example of what can happen when you don’t know your stuff, as told by one of my colleagues, who happens to be extremely on top of her clinical game now a days:

“When I first started in this territory, I had a doc degrade me for 50 minutes and told me to never come back until I knew my effing sh*t. Afterwards, I walked down the block into a little alcove area, sat down and bawled my eyes out.”

That’s reality. If you are coming from a primary care world where there are 30 me-too products that do the same thing, where you were required to get “x” number of signatures per day, and often felt like the UPS man delivering samples, you probably felt like you weren’t adding much value to the healthcare conversation. All that changes in our world. Here, you are expected to bring value to the conversation. In the Oncology world, whatever you are selling is (relatively) unique and we (generally) operate by appointment, not sample drive-by drop offs.

Another reason to know your stuff is you have one chance to prove yourself when you get that first face time with your customer.  You may have waited nine months for that appointment or lunch.  You may have waited in the waiting room so many times you are mistaken for a patient.  You may literally think you will never see this oncologist. When you get that appointment you need to nail it. Non-negotiable.  Know your stuff and prove yourself.  Nothing is handed to you in our world. Only then will you find yourself no longer waiting in waiting rooms, but instead receiving requests to come to the office and questions about patient cases that are relevant to your product.

 

RESPOND IN NO GREATER THAN 24 HOURS.

Once you do receive those requests, it is absolutely critical that you are responsive, as quickly as you can be, and that your response time is no greater than 24 hours.

When you receive that request to come to the hospital from a physician whose 40 year old patient on a ventilator has been given 24 hours to live and her family has Power of Attorney and has finally decided they want to know if their family is at hereditary risk, you better haul yourself down to that hospital, regardless of whether it’s convenient or not.  After that patient is gone, that information dies with them, and that family is left to wonder, “what if.”

That request and your response time will make or break your chances of ever working with that provider again in the future.

DON’T BREAK THE CIRCLE OF TRUST.

There are two circles: your clients (this includes their staff!) and your fellow oncology sales professionals.  They are both important to your survival.  You see, oncologists remain the most difficult specialty to access among the top 20 common specialties, and it’s no joke how hard it really is to see them.  ZS Associates, a healthcare consulting firm, publishes really interesting data around physician access and Industry marketing strategies.  In their most recent oncology research, ZS reported that Oncology is the most restrictive specialty for sales people for the second year in a row. An overwhelming 65% of oncologists reported they had placed moderate-severe restrictions on access for industry reps, and an additional 11% reported placing severe restrictions on access.  I don’t have to tell you, the math is not in our favor. Compare this to less than half of primary care accounts surveyed placing similar restrictions, and you might wonder why you chose to be in Oncology. This means you must always respect the time and wishes of your clients.  If they give you 10 minutes for an appointment don’t keep them prisoner for 30.  You will not only break the trust with that client but you will ruin it for the rest of us, in effect, breaking both circles of trust.  While you might think that breaking the circle of trust among your colleagues from other companies is not important, I am here to tell you otherwise.

As I mentioned before, we’re a small group of sales professionals compared to a primary care world.  Many Oncology Sales Professionals have been in the space for a long time, and the industry for even longer.  We know things.  We know people, and we like helping each other. We have developed relationships you couldn’t possibly have in your first year as an Oncology Sales Professional.  (Note: that’s OK.  You’ll get there too if you follow The Rules.)  This means you don’t show up at a sponsored tumor board “accidentally” when you know you should only be there if you sponsored.  (On that note, never, ever speak up at tumor board unless you are called on.  Don’t do it.) It means you don’t stop by with doughnuts and coffee when you know the physician will be meeting with their scheduled rep that day. (By the way, lose the doughnuts and coffee.) It means you respect your colleagues, and know they are facing the same challenges you do.

In the DC/Baltimore area we are really fortunate to have a listserv for all Oncology Sales Professionals on which we communicate updates about accounts, trade appointments, look for swaps and make sure our clients are being treated in the right way.  We look out for each other.  If you are in the DC area and need to get on the listserv, shoot me a note.  I’ll get you to the right person.

REMEMBER THERE’S A PATIENT AND A FAMILY INVOLVED

You must always remember, at the end of that chemo line, on the table in the OR, behind that film displayed on the screen at tumor board, connected to that tube of blood at the lab: there is always a patient’s life at stake. There is a family that is hurting.  There’s a doctor who is trying their best to fight an ugly opponent that doesn’t play fair, and doctors are working under extraordinary circumstances where they are asked to do more for less and with less.  The best oncology sales professionals know this.  They remember this. You think you got screwed with your quota this quarter? (Maybe you did, c’est la vie sometimes in sales.) Well, how about trading places with that patient.  I bet they would take you up on the offer. Reps who think only about their commission can be seen through just like a window.  Most of the time we make great money.  Sometimes we don’t, but don’t be that rep.  Make the right decision, every time, and it will pay dividends.  Doing the right thing will never come back to haunt you.

YOU WILL HAVE SOME AWFUL DAYS

I’m talking go out to your car and cry awful days.  Oncology sales can be tough.  It can also be extremely rewarding.  I am often involved on young cases- I remember some of them vividly.  There’s just some cases that stick with you, and make you thankful for everything you have in your life.  One time a case might just hit you in a way that you can’t explain.  Be prepared.  It will happen.

You’ll have some days where you wonder if you made an impact anywhere.  You’ll have days where you are soaking wet, drenched in rain and certain that steam is rising from your clothing when you walk into buildings.  You will pick up lunch for an office and it will spill all over your car/you. (Note: ALWAYS use a delivery service- what are you, a caterer? No.)  You will get stuck on the Beltway and it will take you two hours to go five miles so you miss your one allotted appointment for the year, or the staff will “forget” to put your meeting in the physician’s calendar.  You will schedule a dinner program with a world renowned oncologist as the speaker and everyone who RSVP’ed will stand you up.  (You will be mortified, but take the opportunity to learn from the speaker during your one on one dinner that you will have instead.) You will be asked if you need a college degree to do your job.  (Demonstrate restraint.  This person probably hates their life.) One day, you will be right and the doctor will be wrong.  Back your statements up with fact and know that you still may lose the debate.

One day it will be all you can handle.  You’ll get a latte from Starbucks, you’ll turn on your radio, and you’ll sit in your car and cry, out of pure frustration– but just for a minute.  Then you’ll put on your big girl panties and you’ll do it all over again.

***********************************

Welcome to your first year in Oncology Sales.  Hold on tight.  It will sure be an adventure, and hopefully one you will be glad you came on.

Many thanks to my fellow Oncology Sales Professionals, Leeann Barlow, Angela Redding, and Tara Hasher, for serving as consultants on this piece and as my day-to-day support network. 

Related Posts:

 

Now is a critical time.

Breast Care for Washington has been open for six months.  During this time we have succeeded in providing care to all patients that have come through our doors, regardless of ability to pay.

We are the only provider of breast cancer screening, diagnostics and patient navigation to treatment, regardless of ability to pay, East of the Anacostia River in Washington, D.C., and the only provider of breast cancer services housed in a primary care setting in the entire metro area.  We are not alone in this fight against breast cancer in Washington, D.C., but we are doing it differently, and we’re making an impact.

You might ask yourself why that East of the River locale qualifier is important.  The reason is Ward 8 has some of the highest breast cancer mortality rates in D.C. Before Breast Care for Washington existed patients had to travel well outside of their local neighborhood for care.  We know that providing care to patients in their local neighborhood, in an approachable, culturally sensitive way is paramount to patients seeking and receiving care.  This is particularly true when dealing with breast cancer, which has many cultural stigmas associated with it. These cultural stigmas can be barriers to care. Our six month data shows that we are diagnosing breast cancer at a rate twice that of the national average and that the average age of our first time mammogram patient is 52: twelve years older than the recommended age for a first time screen.

Now is a critical time for BCW. Your support keeps our doors open.  We are exceeding strategic projections for number of patients seen, which tells us that there is a huge need for our services, but it is also a challenging time as we need to raise additional funds to keep our promise of offering care regardless of ability to pay. Please watch our video (produced by yours truly!) to learn more about what we have accomplished in six months and why your financial support is more important than ever.

  Our six month data shows that we are diagnosing breast cancer at a rate twice that of the national average and that the average age of our first time mammogram patient is 52: twelve years older than the recommended age for a first time screen.

This holiday season you can give meaningful gifts that support our local community and change the lives of women in Washington, D.C. Instead of buying material presents this year, your donation to Breast Care for Washington can be given as a gift to someone you love.

Here’s how it works:

  1. Make a donation to Breast Care for Washington through our website.
  2. In the “special purpose” section notate who you would like this gift to be donated in honor of and your address where you would like the card shipped.
  3. Wait for the arrival of a card explaining your gift to your recipient this holiday season.

Alternative Gifts available include:

  • $25: Provides gowns for 25 women to receive mammograms.
  • $50: Covers the fee for a 3D mammogram for an uninsured/underinsured woman
  • $100: Covers the fee for our radiologist to read three screening mammograms
  • $200: Covers the cost of a screening mammogram for one uninsured woman
  • $1,000: Covers the cost of a screening and diagnostic mammogram, and a breast ultrasound for one woman.

The monetary amount you spend will not be included on the card, as we feel the most important part of giving is the act of giving itself. The card will include the service that the amount covers.

We hope you will join the many who feel that the Holidays should be a time of true giving, a time to teach children that we all make our communities better when we give back, and a time to uplift those less fortunate than ourselves.

ABOUT BCW: Breast Care for Washington was founded in 2012 as a community-centered breast cancer screening organization to enhance access to breast cancer screening and care among medically underserved women in the Washington, D.C. area. Our founders are two local women – Dr. Regina Hampton, a highly regarded breast surgeon, and Beth Beck, M.A., CHES, the former executive director of Capital Breast Care Center of Georgetown Lombardi Comprehensive Cancer Center.

Our mission is to reduce the breast cancer mortality in the Washington, D.C. area by promoting access to breast cancer screening, diagnostics, and treatment to all women regardless of their ability to pay.

Our programs and services are innovative and embed breast cancer screening within a patient-centered medical home model of care.  In May of 2014 we opened a permanent screening center within a federally qualified healthcare center (FQHC) – Community of Hope. Our facility is housed in the new Conway Health and Resource Center in the District’s Ward 8.

Breast Care for Washington is the first and only facility to offer state-of-the-art technology with 3D imaging east of the Anacostia River and the first entity to provide comprehensive breast screening services within a primary care setting in the metropolitan area.

Six Family Health History Resources

What you know can save you. Family health history is information about diseases that run in your family and other factors like diet and lifestyle that may affect your family’s health.

Knowing this information can help you and your physician partner together to develop a personalized health management plan. In fact, you may be able to prevent certain diseases by knowing your family health history and making healthier choices because of it.  Ever since 2004, the Surgeon General has nominated Thanksgiving as “Family Health History Day.”

family portrait

 

SIX FAMILY HEALTH HISTORY RESOURCES

#1: This family health history guide from Geisinger Health System.

It provides a detailed look at family health history and some guidance about what to ask! Geisinger Genomic Institute has partnered with Weis Markets to develop “The Family History Project,” which aims to help us better understand health at a population level and improve research. The website has some neat interactive tools to play around with. Take a look!

#2: These tips from The National Center for Complementary and Alternative Medicine at the National Institutes of Health.

#3: This video that has interesting facts about family health history. Did you know that only 1/3 of patients have a documented family history?

#4: This great article featuring Breast Care for Washington’s Medical Director, Dr. Regina Hampton.

Did you know that white women are more likely to be diagnosed with breast cancer but black women are more likely to die from it? Asking about family history can guide you and your physician to make personalized screening decisions.

#5: This briefing on surveillance of high risk colon cancer patients that includes five recommendations to improve services for patients.

Families with striking colon cancer family history are recommended to be screened at younger ages and more frequently. This is proven to reduce deaths but 64% of clinicians believed that someone else should be carrying out the surveillance work.

#6: This video from a genetic counselor about family history. She lists some helpful questions at the end.

I hope these resources are helpful. While family health history goes beyond cancer family history, cancer family history is my focus. I encourage you to participate in National Family Health History Day this year on Thanksgiving and ask about all health history in your family. You might be surprised what you find out!

Check out this storify version of this post, here.

 

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.

MAKING A DEAL WITH THE DEVIL

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.

PROTECTING YOURSELF FROM YOURSELF

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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