Protecting Pediatric Brain Tumor Research

pediatric brain tumor research

The Department of Defense’s Peer Reviewed Cancer Research Program has been an integral facilitator and supporter of cancer research since fiscal year 2009. This program facilitates high impact, innovative research to fund unmet needs in cancer research. Funding is granted only for initiatives that directly address the topics set forth by Congress.  In Fiscal Year 2016, Pediatric Brain Tumors were added as a strategic priority. Bladder cancer, lymphoma and Immunotherapy were also new initiatives for 2016.

A significant proportion of cancer research funding is supported via the Department of Defense’s Peer Review Cancer Research Program.

This year, The National Defense Authorization Act nearly included two provisions that would have dramatically limited pediatric brain tumor research.

  • Sec. 756 would have limited DoD research to benefit Members of the Armed Forces, only.
  • Sec. 898 would have required doctors and scientists performing brain tumor research to undergo the same review/audit/compliance process as those reserved for multi-million dollar weapons systems.

Pediatric Brain Tumors are the leading cause of solid tumor cancer death in children age 0-14. To learn more about why research is absolutely necessary, I highly suggest heading over to Humans of New York to read Brandon Stanton’s Pediatric Cancer Series.  In 18 days through social media, he raised almost $4 million for Pediatric Cancer Research and emotional/psychological support services at Memorial Sloan Kettering Cancer Center. The speed and amount of money raised by Brandon is unprecedented. Over 100,000 people donated after seeing pictures and reading real stories from patients, caregivers, physicians, nurses and hospital employees who fight the battle against pediatric cancer ever day. The Facebook posts were touching, gut-wrenching and raw.   This one, really got to me.  And this one, just devastating.

Access to clinical trials and translational research is critical in forging a path towards a cure. As I mentioned previously when discussing the National Brain Tumor Society’s Head to the Hill event, children are at a huge disadvantage when diagnosed with cancer because less research is funded for pediatric cancers.  This is particularly true in brain tumors where no standard of care exists for treating pediatric brain tumors.

Thanks to the amazing efforts of advocates around the country, access to funding for pediatric brain tumors has not been restricted. By picking up the phone and calling, sending letters and emails, and tweeting using the hashtag, #researchnotredtape, the Brain Tumor Community was heard. The American Brain Tumor Society reports that, “137 patient advocacy groups, medical societies, veterans groups, research advocacy organizations and colleges and universities” co-signed a letter that was distributed to all 100 Senators prior to voting on the bill.  Illinois Senator Richard Durbin brought forth a bi-partisan amendment that eliminated these two provisions, opening access to research.  It passed, 66-32 in the Senate, this June.

Here’s a video from the Senate Floor where you can learn more about why funding for critical cancer research is paramount.

Disclaimer: All writing on PUGTATO is my own personal view.  It may not necessarily represent views of my employer, nor should anything I’ve written be considered medical advice. 

Social Media Day 2016

Did you know there is a day dedicated to celebrating Social Media’s impact on Mashable Social Media Day 2016communication and global connection?  Social Media Day, June 30th, is a concept developed seven years ago by Mashable. The goal of the day is to engage, inspire and fuel connections among people who are passionate about Social Media.

Today there are social media meet ups around the world in honor of Social Media Day, with a main event in NYC. If there is no live meet up where you live, you can easily set one up! Submit your location as an official Social Media Day Sponsor, here. If you are not headed to a live meet up, you can join in the fun by using hashtag #SMDay and following @mashableevents and @MashSMday!

 

Head to the Hill: Brain Tumor Patient Advocacy

Head to the Hill Brain Tumor Advocacy

Together voices are stronger.  Together communities make change.  This past May during Brain Tumor Awareness Month I had the great privilege to participate in the National Brain Tumor Society’s Head to the Hill Event.  Head to the Hill is a powerful advocacy event held yearly in Washington, D.C.  During the two day event, 304 advocates from 39 states joined together to ensure the voice of the brain tumor community reached our elected officials on Capitol Hill.

Head to the Hill 2016
Me and Brian, a brain tumor survivor and veteran Head to the Hill attendee. Turns out we live in the same city.

Day one of the event was advocacy training. Participants were seated by their respective states.  Some states had two advocates total and others had three tables of advocates. Something amazing happened Day One as we sat and learned about the challenges the brain tumor community faces in appropriating funds for research, lack of access to care and unsuccessful clinical trials: you could feel the energy in the room building.

 There is something so powerful about being surrounded by people who seek to achieve a goal that serves no other purpose than to help others. The sense of urgency to create change was tangible.

We spent much of Day One learning about the policy changes we would be asking for.  The second half of the day was spent building strategies to execute our asks in front of our Senators and Congress people, listening to updates from the NCI and learning a bit about Capitol Hill from a staffer. The day concluded with time to recognize Ependymoma Awareness day and a late afternoon event with CERN, the Collaborative Ependymoma Research Network that included a butterfly release and patient testimonials.

There were three specific asks for Head to the Hill in 2016:

  1. Appropriations for Medical Research and Drug Development- This ask requested an increase in funding for NIH and NCI.  The significance of this ask is two fold. First, there are few therapeutic options for patients with a brain tumor. The overwhelming majority of therapeutic agents studied in clinical trial have not made it to market.  As such, brain tumors remain one of the most deadly forms of cancer today.  Second, private investment/research and philanthropy cannot replace the research efforts by agencies like NIH and NCI.  Furthermore, increased funding is needed for these agencies to speed up the time from discovery to approval because most treatments studied in clinical trial will fail. The impact that a breakthrough therapy would have on the community is tremendous.
  2. Childhood Cancer STAR (Survivorship, Treatment, Access and Research) Act- This ask serves to advance pediatric brain tumor research and child-focused cancer treatments.  Did you know that no standard of care exists today for children with a brain tumor?  This means that children are currently given adult protocols with the hopes they will work. Unfortunately, pediatric brain tumors are the most common form of tumor in children under age 19, and the number one cause of cancer related death in children under age 14. Using adult treatments on children may help them survive their disease, but more often than not, leaves children with devastating life-long complications. No one in the medical community and no patient or family member can really call that a success.  The goal of children specific research and treatment is to ensure that when treatment is successful and keeps a child alive, that child is able to live a good quality of life. An important piece of this legislation is its focus on improving access to and clarity around compassionate use policies.  Compassionate use is “the process by which a patient with a serious or life-threatening illness can be granted access to therapies still in development and outside of the clinical trial setting, when there is no comparable alternative.”  Currently it is very difficult for families to understand how to apply for and how to find opportunities for compassionate use.
  3. Oral Chemotherapy Parity- This ask would require that insurers cover oral chemotherapy on an equal basis as chemotherapy given intravenously or by injection.  Why is this important?  IV or injectable chemotherapy administered in a hospital setting is generally covered under a medical benefit, which means significantly lower cost to patients. The standard of care chemotherapy for many brain tumors, Temodar (Temozolomide) also happens to be the treatment keeping many patients alive today, and even as a generic can come with monstrous co-pays/co-insurance because it is covered as a prescription and not the life-saving medical benefit. For a large proportion of patients, Temodar is the only pharmaceutical option with a proven survival benefit for treatment of their brain tumor. Patients at Head to the Hill told us stories of thousands of dollars a month in prescription costs for prescriptions that keep them alive.  Even paying thousands of dollars a month, there is no cure for a brain tumor, which is why the first ask is so important. Oral chemotherapy access is critical for patients.  It improves ease of treatment and quality of life.  It improves ease of treatment in that patients do not have to travel to receive therapy.  Some patients may have to travel hours to get to their physician. It improves quality of life because, as one patient put it, “who wants to be throwing up surrounded by strangers at their physician’s office? It’s embarrassing and demoralizing. If I’m going to be sick, I want to do it in the comfort of my own home.”

Day Two was spent on Capitol Hill meeting with respective Senators and Congresspeople. As a Maryland resident, I had three meetings. The day started with our entire state group meeting with the staff from Barbara Mikulski’s office. My local group later met with the Deputy Chief of Staff at John Sarbanes office and finally the entire group reunited to meet with representatives from Ben Cardin’s office. There is something so powerful about being surrounded by people who seek to achieve a goal that serves no other purpose than to help others. Patients and family members shared stories of what this advocacy event meant to them. The sense of urgency to create change was tangible. As a first time participant, I knew nobody going into this event, but left with a sense of community and shared purpose.

 

 

 

 

 

Here’s a great picture of Team Maryland after our first meeting with Senator Barbara Mikulski’s office:

Head to the Hill 2016
Maryland Advocates after meeting with Chris VanHollen’s office.

Head to the Hill was an amazing, humbling experience. For more information about Head to the Hill, please visit the National Brain Tumor Society. To see more pictures from the event, search the hashtag #head2hill and click “photos.”  For my previous post on Brain Tumor Awareness Month, with more facts about brain tumors and the struggles related to research, please head here.

If this is a cause that is important to you,  I would strongly encourage you to get involved either in-person next year or virtually all year long by supporting the message on social media and by writing/calling your elected officials.

Disclaimer: All writing on PUGTATO is my own personal view.  It may not necessarily represent views of my employer, nor should anything I’ve written be considered medical advice. 

Managing Online Physician Reviews

Managing online physician reviews healthcare social media strategy

You know you’ve been there.  You want to find a new doctor or you’ve already selected a new doctor and you are seeing them for the first time. What do you do?  You Google! Before we go any further, let me first suggest that you become a discerning Googler when it comes to healthcare.

Many times, I end up having to dig deeper to page 2 or 3 or 4 on an online search to find substantial, credible information, and that’s crazy. Having to dig to page 3 or 4 to find the credible health information we seek is insane and poses a real problem for physicians and healthcare practices.

Today I’m passing along a great podcast for those interested in healthcare social media.  The podcast, “Doctor’s Reviews are In,” from Amazon #1 Best Selling Author, Daniel Lemin, tackles an interesting aspect of social media: online physician reviews.  Mr. Lemin sat down with Dr. Kevin Pho, the premier expert and leading physician voice for all things healthcare social media. If you haven’t checked out his comprehensive encyclopedia of a blog, you must.  He publishes four times a day.  Wow.

Inevitably, behemoth sites such as healthgrades.com and vitals.com come up first in any physician related online search. On these two sites, there is currently no requirement and no way to verify if a patient who writes a review has actually been seen by the physician they have reviewed. Healthgrades mentions they verify the person posting is not a spammer by “going through several validation steps,” such as confirming a reviewer’s email address. There is no mention of ability to confirm the patient actually saw the physician. I could not find an FAQ section on vitals.  I looked for a few minutes.  Either it’s not there or it is buried in some section of the website that is difficult to find, rendering it the same as not existing.

There is at least one online review company that offers verified reviews. ZocDoc offers a number of pretty cool tools: ability to schedule appointments online, to store redundant, painful check-in paperwork, and to review physicians you have seen. Their website is pretty slick, and easy on the eyes.

So what’s a physician to do?  Rely on word of mouth?  Ignore fake reviews?  Continue to be incognito online?  No!  Today it is more important than ever for physicians to be proactive about building their online reputation.  Dr. Pho eloquently points out that the practicing physician voice is almost totally missing from the online world. In addition, he stated that when a review is legitimate, studies suggest that most reviews are, in fact, positive!

Having to dig to page 3 or 4 in a Google search to find the credible health information you seek is insane and poses a real problem for physicians and healthcare practices.

I like Dr. Pho’s recommendations to offset and manage a physician’s online reputation.  Dr. Pho suggests taking a proactive, positive and creative approach to managing online reputations in healthcare.

  1. Bring your ratings system in house.  Bringing this feature “in-house” provides more control for a physician practice. The way I see it, there’s a number of ways to do this.  One, form a relationship with a service like ZocDoc so that you ensure reviews are legitimate and ranked well in online searches. Two, have patients write testimonials that are mailed in to your practice and put online.  Option two is probably not viable for most practices given the over paperworked, metric driven healthcare system that we exist in. Three, get an iPad for your practice so that patients can do a review at check out in the waiting room. Your IT guy can upload them to your website as featured testimonials.  Sure, it’s not a “usual” thing to do, and without a doubt, someone in the practice will complain that it’s too cumbersome or causes them too much extra work. However, I would argue losing business to a poor online brand and fake reviews is a worse idea. For the right practice that has a champion to own this process and is committed to improving their online brand, this could actually be a very easy thing to do.
  2. At a minimum, set up a LinkedIn profile.  Come on, docs!  This one is so easy.  It takes less than 20 minutes to set up a bare bones LinkedIn profile. Setting up a LinkedIn profile creates an online resume, provides you a public image online and lends you the power of LinkedIn’s search engine optimization.  Having the power of LinkedIn’s SEO is important, given that the unverified review sites have excellent SEO and often outrank physician’s own websites when their name is googled. Don’t have the time to make your profile or want to be trained on how to manage your social profiles?  Contact me.  It’s painless.  I promise.
  3. Consider joining HCP only social media sites like Doximity and SERMO.  Again, creating a Doximity or SERMO profile puts some powerful SEO behind your name, and connects you with a vast HCP network. Currently 500,000 physicians are members of Doximity.  Doximity also has a neat feature that allows HCPs to send and receive secure, HIPAA compliant faxes right from a mobile device. SERMO is the largest, global HCP-only social networking site with over 600,000 physician members.  It features such benefits as medical crowdsourcing for complex cases and confidential real world healthcare discussions.

There was so much fantastic information covered in the podcast.  I suggest taking a listen for yourself. The podcast is available on Manipurated.com, here. View my recommendations for additional ideas to start building an online brand in my previous post, “A lesson in personal branding: hiding online is no longer an option.

Taking a proactive approach to managing online reputation in healthcare will increasingly become important as patient satisfaction scores are already starting to drive reimbursement from payers.  Furthermore, patients are demanding a better service experience from their healthcare providers as healthcare costs are now frequently pushed down to the patient in the form of higher co-pays/co-insurance, consumer driven healthcare plans with high deductibles, and rising chronic disease epidemics. Dr. Pho points out that healthcare tends to lag a few years behind the newest trends.  Now that most of us can’t even eat at a restaurant without “Yelping” it first, I think it is safe to say, we are almost there with healthcare. I for one, am excited to see what the “Yelp” of healthcare will be!

Brain Tumor Awareness Month

brain tumor awareness month

May is Brain Tumor Awareness Month. If you’ve been a long time reader of my blog, and maybe even if this is your first time stopping by PUGTATO, you know I’m passionate about the mission behind oncology.  There is still so much to learn about cancer.  Every cancer is different, and the era of personalized medicine is here.

Brain Tumor Facts:

  1. There are over 100 types of brain tumors.
  2. In the United States roughly 25,000 people will be diagnosed with a malignant brain tumor in 2016.
  3. 16,000 will die.
  4. 53,000 people will be diagnosed with a benign brain tumor or central nervous system tumor in 2016.
  5. 4,600 brain tumors will be diagnosed in a patient 19 years old or younger.
  6. Brain tumors are the leading cause of cancer related death in children under age 14.

There are no early detection or prevention measures for brain tumors.

There are no prevention measures or routine surveillance techniques for a brain tumor, and we really don’t know what causes them. Few therapeutic options exist for treatment. Treatments that are available may leave patients with long term complications that require significant psycho-social and functional support from caregivers and others.

The most common and most aggressive form of brain cancer is Glioblastoma Multiforme (GBM). It is estimated that 12,120 Americans will receive a GBM diagnosis in 2016. Glioblastoma Multiforme has roughly a 4.7% five year survival rate. (This percent varies based on the source, but generally falls at less than 10%)  There is usually no cure for Glioblastoma Multiforme, making GBM one of the most deadly diseases in the United States.

Research is absolutely critical to finding new effective treatments for brain tumors. The National Brain Tumor Society reports that, “despite the devastating prognosis and prevalence of brain tumors, over the last 30 years there have only been four (4) FDA approved drugs and one (1) FDA approved device for the treatment of brain tumors.” Even more staggering, “Between 1998 and 2014, there were 78 investigational brain tumor drugs that entered the clinical trial evaluation process. 75 failed. That is a 25:1 failure ratio in developing new brain tumor treatments over the past two decades.” Making progress in this disease state is tremendously difficult.

Between 1998 and 2014, there were 78 investigational brain tumor drugs that entered the clinical trial evaluation process. 75 failed. That is a 25:1 failure ratio in developing new brain tumor treatments over the past two decades. ~The National Brain Tumor Society

There is an enormous need for more and faster research that translates into longer lives for patients.  Brain tumor research needs more funding so experts like Mark Gilbert, Chief of the Neuro-Oncology Branch at the National Cancer Institute and his incredible team at NCI can create, discover and apply new ways to treat brain tumors that prolong survival.  I had the great opportunity to listen to two talks given by Dr. Gilbert this month.  There were actual moments when my jaw dropped. (I distinctly remember the part of the presentation on IDH-1 mutated GBM and starving brain tumor cells of glucose.  I’ll always be a genetics geek.)  It is impossible to appreciate the magnitude of the work that happens at NCI and other laboratories all over the world.  When you stop and pause for a moment, you realize researchers are creating the future. They are creating something from nothing.  I often wonder how they even think to come up with a place to start?!  It’s mind boggling.  Truly, it is inspiring. Every trial and every result is an idea or concept that did not exist before, and might save someone’s life.

Over the next couple of weeks I’ll be sharing first hand experiences from Brain Tumor Awareness Events. Below are some resources to check out if you are looking for more information about brain tumors. This list is by no means meant to be exhaustive, but can lead you in the right direction to get started learning about brain tumors.  If you like the images in this post, I encourage you to visit Accelerate Brain Cancer Cure (ABC2) on Facebook, where you can download a number of images and “donate” your Facebook cover/profile picture in honor of Brain Tumor Awareness Month.

942934_457135767694634_1856102948_n

Is a resource you have used and loved missing from my list?  Please share! I’d love to add it.

Disclaimer: All writing on PUGTATO is my own personal view.  It may not necessarily represent views of my employer, nor should anything I’ve written be considered medical advice. 

 

 

 

Reputation and Crisis Management in Healthcare Social Media

healthcare social media policy crisis management

Welcome back to the final installment in my three part series on healthcare social media strategy and implementation. Part one, “How to create a Healthcare Social Media Strategy and Policy,” discussed important questions to consider before taking your healthcare organization online.  Part two, “Online Content Strategies and Paid Promotions in Healthcare Social Media,” was a deeper dive into real world applications and how to’s for brand managers. I’m excited to report that Part two was featured on two of LinkedIn’s pulse channels, the Social Media channel and Healthcare channel! We had a fantastic discussion in the comments, which I would recommend you head on over to read.

Digital engagement in healthcare remains particularly interesting, due to its perceived and real risks to organizations. Today we will discuss reputation and crisis management on social media: how to mitigate, respond and fix online.

healthcare social media policy crisis management

When it comes to “fixing” many people may think of Olivia Pope.  In healthcare, I’m here to tell you that bullying and ultimatums will not work. (Unless you’re an insurance company, in which case, bullying physicians seems to be status quo. That however, is a conversation for another day.) Let’s take a look at what will work when it comes to social media crisis management in healthcare.

Consumers have high expectations about what they can expect from brands and organizations, and this holds true in healthcare, as well.  Patients increasingly seek and share medical information on social platforms.  As such, it is important to have a strong plan in place for the “who, what, why, when, where and how” of social media crisis management. This plan should strive to avoid crisis, slow escalation and provide guidance for addressing concerns.   Unfortunately, avoiding crisis is essentially impossible, so planning for “when,” not “if,” is important.

PUGTATO’S CRISIS MANAGEMENT PLAN

  1. BUILD YOUR CRISIS MANAGEMENT TEAM– In order to manage a social media crisis, it is crucial that you have a previously designated team that owns the play by play.  This team should be comprised of cross-functional team members, preferably from marketing, communications/PR, and legal.  These team members should have fluid communication. Have this team meet at least quarterly, but more preferably, monthly.
  2. DETERMINE KEY DECISION MAKERS– Who has the ultimate say for no or no-go on the plan? Will they provide provide updates in addition to other methods selected?
  3. HOW TO PROCEED IF KEY DECISION MAKER IS UNAVAILABLE? In the case that the key decision maker is not available, pre-determine the next steps that should be taken.  Refer to your organization’s guidelines for response time from part two for guidance.
  4. MAP OUT POSSIBLE RISKS– Have crisis management team list out all possible known risks to the organization.
  5.  MAP OUT COMMUNICATION FLOW– Create a chart that classifies possible risks by level of impact (e.g., organizational threat, regional threat, local threat, minimal threat) and category (e.g., patient adverse event, recall, safety at organization, information breach, etc.).  Assign communication process for each level so that it is clear to all team members how to proceed. Practice crisis run throughs a few times a year, like a fire drill, so it is not everyone’s first time when it really happens.
  6. MONITOR SOCIAL CHANNELS– I’ve written numerous times about the importance of listening to what patients have to say online. It is one of the most important steps a brand can take to mitigate online risk.  By joining in the conversation purposefully, healthcare organizations can proactively manage their brands. Regardless of what marketing message an organization pushes out, the real world experience of a brand is the marketing message that is received by patients and the public. If you need recommendations for social media management tools, you can find a wealth of information from the social media expert panel I was a part of last year.
  7. RESPOND IN A TIMELY MANNER– Stick to your predetermined goals for response time based on your organization’s capabilities and the type of post.  Keep all responses compliant with HIPAA and FDA social media draft guidelines for industry. Your response should be genuine, empathetic and thoughtful or you risk further damage to your brand. Never lose your cool, regardless of what a poster may say. Remember, you will never please everyone. During a social media crisis, all auto posts should be suspended, so as not to post something that could now be perceived as distasteful.
  8. PUBLISH COMMUNITY GUIDELINES– Posting public community guidelines for your organization can help to set boundaries about what is allowed and not allowed on your organization’s page.  Guidelines can include what types of posts will not be allowed, what type of behavior is and is not allowed and your organization’s policies for comments.  Organizations can require that all comments are moderated, delete comments that are in violation of the guidelines etc. It is important not to completely censor the conversation, deleting every negative comment is unnecessary, but managing your online community appropriately is important.
  9. HIRE AN EXPERIENCED SOCIAL MEDIA COMMUNITY MANAGER–  Managing your online communities should never be left as an after thought or to the newest intern.  The person managing your communities should be knowledgable about your company, its strategic initiatives, weaknesses, strengths, and someone you would take in with you to an important meeting with your most important customer.  Why? It’s quite simple.  This person is the public voice of your brand. This person is the link that connects your patients to your brand. Your community manager should be passionate about both the product/service you provide and also the patients you serve.
  10. DETERMINE RESPONSE CHANNEL– Before responding, it is imperative that your crisis team understands the best way to respond. It may be necessary to respond on more than one channel, depending on the level and type of the crisis an perceived risk to the organization.  For example, a negative patient comment online may only need referral to the patient’s physician. However, a data breach of a hospital’s records may require a dedicated website that addresses the breach, a press release and comments from the hospital’s CEO. Response channels may include, social media, corporate website, email to clients, press releases, making a new compliant dedicated website, hard copy snail mail written responses.

 

I hope you have found this three part series on healthcare social media strategy helpful and informative. You can download my social media strategy & policy template for free.

Understanding your organization’s full capability, how much social you can really take on, is crucial to your organization’s success online. Getting started with one or two platforms the right way is better than spreading your organization too thinly over numerous channels.  Once your team is adept and savvy, and your leadership is comfortable, expanding can help build a well rounded online presence.  Creating a crisis management team and crisis strategy will help your healthcare organization to plan for the worst.  It also may help in gaining buy-in from senior leadership when pitching new social media ideas.  As we truly embrace the age of patient engagement and consumer driven healthcare, healthcare organizations must develop digital strategies that build brands patients can identify with.

 

Related Posts:

 

EHR handcuffs: Let Doctors be Doctors.

EHR, EMR, HealthIT, let doctors be doctors

EHR has been a topic of interest for me for a long time, and was one of the topics I chose to research in depth during my MBA. Five years ago we were half a decade away from the 2015 American EHR, EMR, HealthIT, let doctors be doctorsRecovery and Reinvestment Act deadline that would penalize providers for not having adopted an EHR.

Five years ago, there was potential to develop a transformational EHR that would truly connect physicians, patients and healthcare stakeholders. Five years later and it is safe to say the initial roll out failed. Physicians overwhelmingly are still stuck with awful EHR platforms that do anything but allow physicians to practice real medicine, by creating electronic silos and adding little to no value.

On a sales call in Maryland in 2010, I visited one of my customers who was 72 years old with no intention of retiring any time soon. When I asked him why he continues to practice medicine he stated, “I’m not in medicine for the money. I do it because I love to see my patients. My patients need me. Medicine is always changing and I’m always learning something new.” Therein lies a major disconnect between EHR implementation/mandates and the real world.  When EHRs serve the purpose of acting as “glorified billing platforms” and require 20 clicks to get a simple medicine, the real goal of EHR and so called meaningful use dissolves into meaningless use. (You see what I did there?)

“I’m not in medicine for the money. I do it because I love to see my patients. My patients need me. Medicine is always changing and I’m always learning something new.”

I believe technology used in the right way will change health care for the better.  There is proof of this concept staring us in the face: social media connecting patients and physicians all over the world, wearables that engage patients to improve their own health, the list goes on.  So why, when it comes to technology that documents the human part of health care, is it so hard to get that part right?  Why are EHRs the most inhuman part of health care today? Why is it that health care is stuck in the 90’s: faxing millions of papers per day and requiring antiquated EHRs?  It makes no sense!

Thankfully, there’s a real movement at foot to make this change.  This brings me to one of the most disruptively creative forces in health care today- ZDoggMD.  ZdoggMD (otherwise known as Zubin Damania, M.D.) is leading this change by using satire to highlight what pains healthcare providers most. Through humor, he shows us how truly broken our healthcare system has become and has built a following of people ready to help change it.  The latest video “EHR State of Mind” had me laughing hysterically because everything in it is (unfortunately) SO TRUE.  ZDogg is helping to head up a movement in partnership with AthenaHealth called, “Let Doctors be Doctors,” which calls for a new EHR that connects stakeholders and actually allows doctors to, well, be doctors.

The lyrics, set to the tune of Jay-Z’s “Empire State of Mind,” are smart and funny.  It’s sure to hit home with anyone working in health care these days. To learn more and to voice your experience with EHR head over to Let Doctors be Doctors and follow the hashtag #letdoctorsbedoctors.  Without improvements to EHR it’s not just doctors that suffer.  It’s the whole healthcare team that cares for patients and patients, as well.

“Tech should bind us, not blind us to the reason why we care, patient’s face reminds us.”

“Innovation all around but it ain’t in healthcare. Internet and apps for you, but we get ancient software.”

Enjoy!

Dying for a cure this Pinktober: Metastatic Breast Cancer Awareness

breast cancer awareness month, metavivor, metup, metastatic breast cancer, stage 4 breast cancer , pinktober, pink ribbon

Pink parties. Pink Ribbons.  Pink celebrations. Pink boas.  Pink bagels.  You name it, it’s pink in October.  Many people, breast cancer patients and others, find empowerment and emotional comfort in “pink.” Many feel as if they have done good by participating or buying a “pink” good. As I’ve mentioned before in my post, Missed Opportunities: Celebrities are not doctors,  I think it is important to respect and acknowledge that everyone finds empowerment through different avenues. Pink is not evil, although it has been grossly contorted by commercial organizations. Today I want to highlight a group of people who do not find comfort in pink: women and men living with metastatic breast cancer. In fact, these women and men feel marginalized, left out of the breast cancer conversation and hurt by pink.  These are the stories you don’t hear during breast cancer awareness month.  There are no pink boas and glitter.  There are heart wrenching stories and people working together tirelessly for a real change for breast cancer research. If you take a chance to really get to know the stories of metastatic breast cancer, (stage IV breast cancer), your eyes will be opened. I know mine were. The first time I watched this video below, I was shocked.  It took my breath away.

I am concerned and discouraged by “breast cancer awareness” campaigns like “No Bra Day,” that serve no purpose other than to sexualize breast cancer, to focus only on the breast and not the LIVES that breast cancer impacts, and to diminish the importance of today, October 13th, Metastatic Breast Cancer Awareness Day.  Here’s the hallmark media piece for No Bra Day:

nobraday

This campaign and it’s marketing collateral show a complete lack of understanding and empathy for a patient’s journey through breast cancer and a mastectomy.  It’s gross.

Metastatic breast cancer is breast cancer that has spread beyond the breast to other parts of the body.  Often this includes the brain, bones and lung.  Metastatic disease has no cure. It’s painful.  It steals women and men from their families.  It cares nothing of age, race or gender. It has no cure. Patients will live the remainder of their lives undergoing treatment.  There’s nothing sexy, pretty or celebratory for patients with metastatic disease.  Go ahead and tell a metastatic breast cancer patient, or any cancer patient, they “got the good cancer.”  See what kind of response you get.

The reality is that over 100 patients die, every day, in the United States from metastatic breast cancer.  The reality is that roughly 30% of breast cancer patients, regardless of stage at diagnosis, will develop metastatic disease.  The reality is that only 2% of breast cancer research dollars go to fund the deadliest type of breast cancer when one third of breast cancer patients will die from metastatic breast cancer.

The metastatic breast cancer community deserves better.  They deserve our support.  They deserve better and more research funding. They deserve to be at the forefront of the conversation, because metastatic breast cancer is what kills women and men with breast cancer. 30% is not a small proportion.  30% of all breast cancer patients are estimated to develop metastatic disease.  (Why do I say estimated?  You may be surprised to know that the SEER database does not track when a patient’s disease progresses from early stage to metastatic. I found this interesting blog post with a response from NCI on why it is not tracked. The gist: lack of financial resources and complexity of tracking.)

dyingforacure

Rather than focus on what’s negative, however, I want to highlight some of the good.  Today, MetUp.org is hosting a “die-in” in Washington, D.C. to highlight the tragic state of breast cancer research for metastatic breast cancer.  All over the country, people are taking a stand, and highlighting the real, ugly truth about metastatic breast cancer: it kills. To follow the die-in and learn more from patients, families, healthcare providers and caregivers affected by metastatic breast cancer, please follow the hashtag #pinktoblack.  If you’re not motivated to spur change after reading through the tweets, I’ll be surprised.

So let’s stop with the campaigns like No Bra Day and Save the tatas.  Women and men diagnosed with breast cancer are people with lives.  People with families, people with aspirations, people who are “dying for a cure.” Let’s make a difference.  Support organizations like METAvivor and MetUp that are starting to make the real uncomfortable conversation heard.

#pinktoblack metup.org metavivor breast cancer awareness #bcam

Want to learn more?  Here are some great metastatic breast cancer resources:

  1. METAVivor: “METAvivor is dedicated to the specific fight of women and men living with stage 4 metastatic breast cancer. At the time of METAvivor’s founding, no organization was dedicated to funding research for the disease and no patient groups were speaking out about the dearth of stage 4 cancer research.  While more and more people have taken up the cry for more stage IV research, METAvivor remains the sole US organization dedicated to awarding annual stage IV breast cancer research.”
  2. MetUp: “METUP is a diverse, non-partisan group committed to direct action for a viable cure for breast cancer. We protest and demonstrate; we meet with government and health officials and researchers; we support research into metastatic disease; and we speak out against the sexualizing of breast cancer. We are convinced that the deaths of women and men from metastatic breast cancer are a paramount issue, and we pledge ourselves to oppose all who deny the reality of the 522,000 people who will die from metastatic breast cancer globally every year while waiting for a cure to be found.”
  3. Metatstic Breast Cancer Network: “MBCN seeks to: EDUCATE patients about metastatic breast cancer treatments and how to cope with the disease; Educate the public about the differences between early and advanced stage disease. EMPOWER patients to use their story and voice to bring attention to the needs of metastatic breast cancer patients and to use their knowledge to participate more fully with their healthcare provider. ADVOCATE for focused research to find more targeted therapies to lengthen the lives of patients and make metastatic breast cancer truly a chronic disease like diabetes or HIV/AIDS.
  4. National Comprehensive Cancer Network Stage IV Breast Cancer Patient Guide: NCCN is a not for profit alliance of 25 of the world’s leading cancer centers, and provides what are considered the gold standard for cancer treatment.  This e-book is written specifically for patients diagnosed with metastatic breast cancer in patient friendly terms.