Thursday, January 28, 2016

Breaking News! Steve Case has been Confirmed as an ePharma Speaker

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Steve Case is one of the world's best-known and most accomplished entrepreneurs-a pioneer in making the internet part of everyday life, best known as the Co-Founder and former Chief Executive Officer and Chairman of America Online.

Steve Case, Former CEO of AOL; Chairman of Case Foundation and Revolution

Join Steve Case at ePharma Summit as he discusses the past, present and future of entrepreneurship. S. Case predicts that we're at the dawn of the next technological revolution unlike anything we've seen before-the Third Wave of the internet-and he offers attendees expertise, fresh perspectives, and critical advice on how to cope with these significant changes. Download the brochure to see who else is speaking at ePharma Summit here.

Register now to be there live and hear Steve Case explain the importance of partnering with fast-growing startups and how corporations-including large pharmaceuticals-can continue to succeed as significant innovations take hold.

Register for ePharma Summit with the code EPHARMA16BL and save $100.


Chronic Addict or Chronic Pain?

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"It's definitely broken, a hairline crack through the knuckle right there. You need to wear a half cast, so we will get you set up with one of those here. I can't give you any pain medication though; maybe just take Tylenol or Motrin when you get home, as needed."

That is a real-life statement, made by an Emergency Department physician after I broke my hand last weekend. Let's keep in mind that there is proof of a physical break, and I am a patient with multiple chronic diseases, including a widespread central pain disorder. So why was I denied justified pain medication?

About a year ago, new restrictions were placed on narcotic pain killers, like Norco, Vicodin, etc., as a response to "years of requests from the Drug Enforcement Administration, [or DEA], claiming the drugs were overprescribed, creating drug addictions, and too often diverted to the black market." As stated, prescription drug abuse is a huge problem in our country. The number of deaths or overdoses per year from prescription pain medications is nearing 16,000. These regulations impact the number of pills a patient can get, limit refills to zero, and require the patient to physically pick up the prescription from the physician and hand deliver it to the pharmacy, in some cases.

Let's add chronic pain into the picture, and explore the word stigma. Now, no one is arguing that these restrictions are not valid or that we don't have a prescription drug problem in this country. However, from my experience and the experiences of other patients I have spoken to, the regulations have caused real pain, real health conditions, real emergency injuries or ailments to not see relief or pain management. The stricter regulations are there for a reason, yes; however, we have not come up with a better solution or a screening process for those that need proper pain relief.

Well said by president of the U.S. Pain Foundation, Paul Gileno: "The person seeking relief from pain is not suffering from the same disease as a person who is an addict. Two separate diseases but it's hard to decipher because right away people associate pain patients with that group of addicts." In fact, the number of patients who have a real need for prescription painkillers far surpasses the number of people addicted to painkillers: over 100 million vs. 11 million, respectively.

I'm sure that I'm not alone in saying that I would rather have the ER run a urine test or toxicology screen than refuse to administer pain relief. That might not be the answer, and I don't know that I have one per se, but we have to stop refusing to open our eyes to the other population before us: the chronic disease fighters. 

How will you #StopTheStigma?





About the author: 
Kristin Coppens is a social media and digital communications professional, a health activist, an ePatient, and a multiple chronic diseases fighter and blogger. You can read more about her chronic illness journey on her blog, Chronically Kristin, or follow her on Twitter.
She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event. ePharma will take place February 29 - March 2, 2016 in New York City. As a reader of this blog, when you register to join us with priority code EPHARMA16BL, you can save $100 off current rates!

Wednesday, January 27, 2016

Why a Ban on Rx DTC Advertising Makes Me Uncomfortable

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And why digital health will eventually make the ban irrelevant

By Peggy Salvatore

This is the fourth in a series of blogs for ePharma Summit 2016 to explore ways the pharmaceutical industry can maximize the promise of digital health.

I vaguely remember the last time the government imposed a controversial ban on direct-to-consumer advertising. According to my extensive academic research on the history of cigarette advertising (Wikipedia link here) cigarette ads were banned from television and radio in 1971.

The ban on cigarette television advertising meant that the handsome cigarette man wasn’t going to ride into our living room anymore, astride a beautiful horse wearing a ten-gallon hat straight out of a ‘50s Western movie, the stud-ly symbol of American manhood. Cigarette manufacturers could no longer hawk their wares directly into millions of homes to lure the next generation into the romantic world of smoking.

The ban was for the good of the masses. Smoking is bad for your health, and if the public was too stupid to make that decision for themselves, the government smackdown on television advertising would protect the innocents from the evil tobacco manufacturers. The cigarette lobby put up a symbolic fight, there were protestations from First Amendment rights advocates, but the deal was done. Cigarettes = bad. Ban on cigarette advertising = good. It worked. By 2004, half of smokers who ever smoked had given up the filthy habit.

Pharmaceuticals are…bad for your health?

Today, we are facing a television advertising ban on another widely consumed and popular product, prescription pharmaceuticals. Because…somebody help me out here…because they…ummm treat things like asthma, depression and breast cancer. Consumers might run out and buy it. No. Prospective pharmaceutical consumers have to go to their doctor, discuss their conditions and options, the doctor has to prescribe the medication after years of grueling medical study, and the prescription gets second-guessed by the patient’s insurance company regarding both cost and appropriateness.

So, a ban on pharmaceutical DTC advertising (which, by the way, is already highly regulated) protects whom from what, exactly? Those who favor the ban believe it will help protect patients and payers from the high cost of drugs.

The effect of DTC advertising is that patients ask their doctors about a branded drug made by a pharmaceutical manufacturing company that might, in turn, make a profit. And that profit might be used to promote yet more products to treat more diseases that the pharmaceutical company spent an average of $2.6 billion developing, according to the latest Tufts University study on the cost of pharmaceutical R&D.

Simply put, a ban on DTC advertising protects the pharmaceutical companies from making profits that the government perceives to be (guessing here) inappropriately gained and spent.

DTC Bans are Bad for Freedom of Choice

The rationale is that DTC advertising is a driver of drug costs. In reality, drug costs are driven by the cost to develop, produce, manufacture and promote products, and prices are regulated by the customer’s willingness and ability to pay. It’s a complex formula for another day. Let me suggest that an Rx DTC ban is a straw man.

When the ban on cigarette advertising was imposed, people accepted it because smoking is bad for your health. About that, nobody disagrees. A ban on pharmaceutical advertising would be accepted by people who believe that pharmaceutical profits are bad, not that patients are too stupid to make complex treatment decisions for themselves. Patients do not make complex treatment decisions for themselves now.

A ban on pharmaceutical advertising seals the government’s right to restrict the free flow of information. When cigarette advertising was banned, it opened the barn door on government paternalism. That horse is out of the barn, and the cigarette ban man could be riding into territory that will permanently seal the government’s right to control the free flow of information in the marketplace – not just of products – but of ideas.

Innovation is in No Immediate Danger

The rate of innovation in biotech and health technology is breathtaking. Billions of dollars in deals transacted at JP Morgan’s healthcare confab in San Francisco last week, and hundreds of entrepreneurs promoted their health gear at the Consumer Electronics Show a few days earlier.

The field of innovation and the flow of speculative dollars keep private innovation well oiled. The U.S. is still far from total government control of research, development and promotion of the results. Done well, the government has the reach and deep pockets to be a great partner in innovation, and is doing that very well today. I sense we are in no immediate danger of an Rx DTC ban stifling individual initiative or the profit motive. Quite the opposite appears to be the case. New business entities are creating technological advances that drive down cost and increase access to all kinds of healthcare solutions. A ban on pharmaceutical advertising might restrict the promotional ability of the R&D manufacturing sector that can afford mass advertising today. However, let me suggest that a new model of private biotech is emerging that will make obsolete the concerns about the effect of DTC advertising on the cost of drugs.

New, smaller and more nimble Pfizers, Mercks and Amgens are being born every minute. Whether a DTC ban passes on a strong political wind this year will ultimately be irrelevant to the development, promotion and sale of biopharmaceutical products because marketing and sales, like medicine itself, is becoming more personalized. People respond to targeted, digital messaging. And targeted medicine means more cost effective treatment.

What will not be irrelevant if a DTC ban is implemented is a further restriction on the public’s right to know and have access to information in the free marketplace of ideas.

I invite your thoughts and comments.





Peggy Salvatore MBA is a healthcare writer and trainer specializing in pharmaceutical managed markets sales training and health IT. She also has authored books and training programs on leadership and working with subject matter experts. You can read her blogs at www.healthsystemed.com and www.workingwithsmes.com

Tuesday, January 26, 2016

Are Electronic Medical Records (EMRs) Really Beneficial for Patients?

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One of the biggest contributors to the transition to EMRs was Meaningful Use. Now that this is officially kaput, one wonders where this leaves the future of EMRs.

There are problems, though, which often affect the patient disproportionately. EMR use has been linked to job dissatisfaction among health care providers who, then, provide care of a lesser quality. There are also a number of ways these systems can be breached, leading to patient privacy concerns.

These systems can make it more difficult for providers to access pertinent information and there are often issues with parental access. While this is meant to protect a growing child's privacy, this can be a headache - especially for those with chronically ill children.

Perhaps the biggest patient issues are more intuitive, though. Providers are not spending as much time interacting with patients, leading us to feel less cared for and understood. This can also lead to a deterioration of any bedside manner that may be present. For newer providers, this may not develop at all. Compassion is an incredibly important trait for providers to have, and no bedside manner can indicate a lack of this quality.

The other big issue is one that constantly plagues healthcare across the United States and abroad - the lack of patient inclusion regarding design or changes based on patient feedback after implementation.


A few weeks ago, I asked some of my friends to discuss how they felt about Electronic Medical Records (EMRs). Here's what they had to say:
I've found that via the patient portal, it is much easier to request RXs and ask any questions that I might have. I like that you can view test results and track your labs over time. The one thing I don't like is that in Michigan and New York, each of my hospitals used the same EMR system, but they couldn't combine, so one doctor didn't really have access to what my other doctors have. -Leslie Rott 
I love the patient portal from my primary and the one from my rheum[atologist]. I WISH they were on the same system, though, so it would be easier to communicate from both teams. Primary's system is easier to navigate and has my data from forever uploaded - rheum's only has the new data since they instituted the EMR. Overall, great step toward patient empowerment but still some flaws to be overcome -Lauren Elyse Kosinski 
I can certainly echo the above sentiments. I see providers in two different systems and I'm really lucky that my rheumatologist works very hard to keep up to date on everything from everywhere else - even from my dentist who is on a completely different system!

One of the things I dislike a great deal is the inability to see provider notes in our EMR. In order to get that information, we would have to request a copy of our medical records. For those of us who are chronically ill, this can result in astronomical bills. Those of us who are lucky enough to work in healthcare face fines and termination of employment if we attempt to access our own records. And yet, these records often have inaccuracies that cause differences in our care that make a world of difference.

Still, having the access to reorder medications, schedule appointments, and discuss lab results with my rheumatologist makes a world of difference - especially for those of us with anxiety, fatigue, and who lead busy lives.

I would say that Lauren is right on with her comments above. EMRs do make strides for patient engagement, but there is a lot more that can be done.





About the author:

Kirsten Schultz is a health activist and blogger. You can read more about her life living with multiple chronic illnesses on her blog, on Creaky Joints, or follow her on Twitter.  


She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event. 

Saturday, January 23, 2016

Why I'm Going to a Pharma Marketing Conference

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By Danielle La Rocco, MD

Give me cat videos, or give me death. (I don’t always feel so strongly, but sometimes, in the middle of a 24-hour shift covering the hospital’s psychiatric needs, which might involve my assessing suicidal thoughts, delirium, and alcohol withdrawal, what my mind most craves to reset itself between cases is the brief, mind-numbing reprieve of some cats dancing to hip hop.) I’ll just have to get through that inevitable 15-second ad first, right?

Advertisements permeate our lives. As of 2011, one statistic from an academic journal states that “the average American television viewer watches as many as nine drug ads a day, totaling sixteen hours per year, which far exceeds the amount of time the average individual spends with a primary care physician.” Imagine the comparison to time spent with specialists; fairly frequently, psychiatric patients spend 30 minutes a month with their doctor in order to focus on their medication needs. Barring emergencies or major stressors necessitating more frequent visits, such a person would spend six hours of face-to-face time with their psychiatrist per year, or about 38% of the total time they would have spent face-to-face with pharma commercials, all from the isolated, medical-professional-free comfort of their own home.

And that’s not even counting what they might see online. NBC news points out in a 2014 web article that the average American spends 40 minutes a day on Facebook and nine hours a day interacting with digital media. The main source for that stat is, of course, Mark Zuckerberg, who has reason to know about every single one of those 3,285 hours a year that amounts to.

It seems logical that digital would be the next big frontier for pharma marketing. According to one May 2015 eMarketer blog post, “marketers in [the healthcare and pharmaceutical industries] will spend $1.64 billion on paid online and mobile advertising in 2015, up from $1.43 billion in 2014,” which they forecast will rise to $2.55 billion by 2019. That last number is significantly more than the gross domestic products of Lesotho, Liberia, or Bhutan.

In order to become a doctor, one must go through multiple years of specialized training, rife with thousand-page textbooks and hours of grand rounds covering the most cutting-edge research in neuroscience, pharmacology, and therapeutic techniques. By the end of training, one hopes as a medical professional to have a confident grasp of how to care for patients through knowledge of evidence-based treatments. There is also, though, an equally important body of knowledge that exerts an equally massive force on the practice of medicine, especially (I believe) psychiatry: pop culture, of which advertisements play a huge role. I am reminded of this constantly, from the nervous small talk a patient might make about how expensive the Super Bowl ads might be this year to the times a person unexpectedly fighting back tears might ask for one of my (non-Kleenex-branded) “Kleenex.”

An oft-cited statistic in psychiatry is that antidepressants have a 30% placebo response rate. I wonder: what percent is influenced by advertisements?

I’m excited to explore this idea in more depth preceding and during this year’s ePharma conference, where representatives of the healthcare and marketing industries will confab on the next big trends to hit our computers, phones, and even smart watches. Check back at this site, where my colleague Dr. Helena Hansen and I will be writing weekly posts as well as blogging from the event.

Now off to read about that cat who looks like Kylo Ren.



Danielle La Rocco, MD is a psychiatry resident in the class of 2013 at New York University.

Friday, January 22, 2016

I Am inVISIBLE

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A topic that comes up frequently in the chronic illness world is the notion of invisible vs. visible illnesses. A great deal of chronic illness patients have diseases, symptoms, and other factors of their health that are naked to the eye. Other chronic diseases manifest themselves in physical ways, making it obvious to distinguish what ailment the individual is plagued with.

I have been asked, numerous times, a rather interesting question from individuals inquiring about what it's like to live with multiple chronic diseases. The question? "Would you rather have an invisible illness or a visible illness?" Huh. It's a tough question for the chronic illness world. On one hand, having a visible illness allows for the community around you to understand and empathize with your situation. On the other hand, having a visible illness forces that illness or disability to be the first thing people see. Invisible illnesses, in opposition, allow you to lead a "normal-looking" existence, as you look relatively healthy on the outside. This welcomes misunderstandings, criticism, and a lack of empathy, however.

My answer: I'd rather have an invisible illness so I can continue to fight to become someone who is not defined by their diseases. (For more about my personal views on "I Am Not My Disease, a podcast with Mayo Clinic Center for Innovation.)



The effects of the invisible illness conundrum are two-fold: the medical community and the patient's loved ones both misunderstand the situation. Our health system is set up to treat and cure acute conditions in the patients that are seen. Although this type of care is just as necessary, it secludes the chronic community. "People in chronic pain are often misunderstood and mistreated by the medical community. They get labeled as 'drug seekers' in emergency rooms and, as a result, are denied much-needed pain medication," as explained by Psychology Today.

What is the solution here? How do we measure the symptoms of invisible illnesses and chronic pain? I don't have the answer to those questions yet; however, there is an agreeable place to start.

Start with empathy. Start with compassion. As cliche as it sounds, don't judge that book by its cover. I might be partially invisible, but I am NOT my disease.




About the author: 
Kristin Coppens is a social media and digital communications professional, a health activist, an ePatient, and a multiple chronic diseases fighter and blogger. You can read more about her chronic illness journey on her blog, Chronically Kristin, or follow her on Twitter.
She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event. ePharma will take place February 29 - March 2, 2016 in New York City. As a reader of this blog, when you register to join us with priority code EPHARMA16BL, you can save $100 off current rates!

Thursday, January 21, 2016

Why the Regulation of Biosimilars is Integral to Their Success

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As far as many patients are concerned, biosimilars are a confusing topic. With more pharma companies like Amgen working on biosimilars to popular name-brand drugs, this is an incredibly timely issue.

When you add in that some biosimilars 'interchangeables' - specifically, comparable with their name-brand counterparts - that can increase the confusion.

Biosimilars bring tons of new promise for many chronic or terminal illnesses:
The sales decline has companies like Roche working rapidly to develop new drugs that can replace the lost sales. Roche, in particular, is working on a series of new cancer drugs focused on areas like melanoma, lung cancer, and breast cancer that are expected to launch over the next three years in hopes of closing the sales gap created by new biosimilar rivals.
Perhaps this means that the 'moonshot' to cure cancer or the future of patient engagement will be accelerated as well.

There are many things to consider, like the differences between biologics and their biosimilars, the approval process, and patient safety concerns. One recent concern has been the naming of biosimilars. Thankfully, there is a proposed rule regarding the naming of biosimilars from the FDA.

One other sticking point has been patient and physician notification. A fear that many of us on biologics have is receiving a substitute of our medications without knowledge. If our illnesses worsen as a result of the subtle differences and we can't control the disease any longer on that type of drug, this uproots our entire lives from work to caring for our families to our mental health.

Living with a rare autoimmune/autoinflammatory disorder, I've failed seven medications in five years. The last thing that I want to do now that I'm stable is to have my medication - my livelihood - disrupted in such a way. This is especially true know how situations between generics and name-brand medication can play out. Biologics are much more intricate, much more intense. They often can have worse side effects than non-biologics.

For patients to truly buy-in to biosimilars, we're going to have to be courted - to have their safety proven to us beyond a doubt and to be given a choice regarding going on biosimilars. Hopefully insurance companies are listening.

Resources:

Amgen: Biosimilars versus Generics
Biosimilars & Patient Notification

Creaky Joints: Biologics and Biosimilars
FDA: Information for Consumers (Biosimilars)
Fortune: Biosimilars Are Coming After Big Pharma's Bottom Line
Generic Pharmaceutical Association: Biosimilars
Healthy Biologics: What Are Biologics?
International Business Times; What Are Biosimilars? Zarxio, First Drug Of Its Kind Approved In US
Not Standing Still's Disease: Terminology Tuesday: generic vs biosimilar vs brand name 
The Truth About Generic Vs. Brand-Name Medications
Unique Names for Biosimilars





About the author:

Kirsten Schultz is a health activist and blogger. You can read more about her life living with multiple chronic illnesses on her blog, on Creaky Joints, or follow her on Twitter.  


She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event. 

Wednesday, January 20, 2016

[Survey] Digital Healthcare in 2016 | Enter for a chance to win

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Marketing in Healthcare: Patient Centricity and The Digital Transformation | Access the survey

  • Do you ever wonder how patients position their relationship with healthcare providers?
  • Are you, as a patient, satisfied with the current state of care you receive?
  • And as a marketer, have you ever questioned whether YOUR digital strategy may be lagging behind?

Participate in our short survey and receive detailed insights to these questions and many more.
Take the survey here: https://www.surveymonkey.com/r/DigitalHealthcare

Upon completing the survey, you will be entered into a drawing to receive a complementary all-access pass the ePharma 2016* (valued at $2,795), taking place in New York City, Feb 29-Mar 2. Learn more about ePharma here.

We truly value the information you have provided and thank you in advance for taking the time out of your busy day to participate in our survey. The compiled results of this survey will be distributed as a detailed infographic report in our next announcement.

The winner of the free pass will be notified via email within the next week.

Thank you again for your time and input.


*Offer is not valid for existing or pending registrations, and cannot be retroactively applied. IIR USA & ePharma are not responsible for any hotel or travel costs.

Meaningful Use Demise Opens Door to Truly Meaningful Health Tech Advances

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By Peggy Salvatore MBA
This is the third in a series of blogs for ePharma Summit 2016 to explore ways the pharmaceutical industry can maximize the promise of digital health.

Ding. Dong. MU is dead.
The pivot by CMS gives the pharmaceutical industry unprecedented opportunity to leverage digital health in the service of CMS’ goals to promote the appropriate use of technology in a way that really works.

Now is the time for the industry to step forward and use its considerable marketing and sales ingenuity - and budget -  to make its products and knowledge available for the patients who need it in a way that is intuitive to the providers who care for them.  
One week after CMS Acting Administrator Andy Slavitt nailed the Meaningful Use coffin shut  at the JPM16 conference in San Francisco, he co-wrote a column with Office of the National Coordinator for Healthcare Information Technology chief Karen DeSalvo that detailed guiding principles that will direct the transition from MU to a new approach encouraging the use of electronic health records.

According to an article inHealthData Management,   CMS and ONCHIT will use four “critical principles” to guide new regulations to be released this spring.
They are:
  1. Rewarding providers for outcomes that technology helps them achieve
  2. Allowing providers the flexibility to customize health IT to their practice needs
  3. Leveling the technology playing field by promoting innovation and unlocking electronic health information through the use of APIs.
  4. Prioritizing interoperability by implementing federally recognized national interoperability standards.

This is a long-overdue revamping of MU, the well-intentioned but poorly structured and incentivized government effort to force physicians and healthcare organizations to implement electronic patient records.
Consider the new regulations an opportunity to let innovation, user experience and patient best interest come to the forefront without cumbersome and unhelpful rules that hinder progress in this area.

How can pharmaceutical manufacturers direct their digital efforts toward advancing this cause?



 
Peggy Salvatore MBA is a healthcare writer and trainer specializing in pharmaceutical managed markets sales training and health IT. She also has authored books and training programs on leadership and working with subject matter experts. You can read her blogs at www.healthsystemed.com and www.workingwithsmes.com

Tuesday, January 19, 2016

The Importance of Compassion

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Most chronic illness patients that I know have faced difficult times regarding at least one physician, if not several, that didn't fully hear their chief complaints or presenting problems. For most of us, this results in delayed diagnosis and treatment, which can then result in a health issue becoming chronic or worsening.

Lately, there have been a few high-profile cases involving patients who were being denied care then passing away as a result.

I believe this all goes back to the idea of listening to and not just hearing patients.

In the case of Barbara Dawson from Florida, it sounds like the abdominal pain was not fully examined and key questions that even patient advocates like myself know about weren't asked. Pulmonary embolisms can be difficult to diagnose and treat, but you can also catch the clot before it gets to that point. Given the time period here, perhaps these measures would not have saved Ms. Dawson.

That does not eliminate the fact that a lack of listening to a patient combined with compassion have resulted in an unneeded death. 

These people are not alone. I've lost people close to me due to infections that weren't treated effectively or due to the belittling of issues. Many of us have. But what can those of us in the patient or pharma realm do to halt these types of issues?

The biggest step is to encourage compassion. This can be through advertisements for medications or companies. It can be a part of the hiring or partnering process. We can encourage, or demand in some cases, changes in the medical education process to include more patients sharing their experiences with students and training in compassion.

We see similar changes via public policy though regarding insurance more than patients themselves. We see it in the introduction of new devices to bring healthcare into a digital age. We see this especially in the #wearenotwaiting movement associated with diabetes, which seeks to create innovation led by patients.

Developing compassion and empathy, whether as a medical student or a long-practicing physician, can save lives. It can even cut down on road rage and the like for the rest of us.

Let's start emphasizing compassion in all parts of our lives.

Resources and Further Reading:

Barbara Dawson:
CNN
Miami Herald
NBC News

Compassion:
The Center for Compassion and Altruism Research and Education at Stanford University
Compassion and Integrity in Medical Education
Compassion Cultivation Training
Does Medical School Erode Student Empathy?
Has Your Doctor's Success Required More Competitiveness Than Compassion?
Researching the Effects of Compassion at Emory




About the author:

Kirsten Schultz is a health activist and blogger. You can read more about her life living with multiple chronic illnesses on her blog, on Creaky Joints, or follow her on Twitter.  


She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event.  ePharma will take place February 29 - March 2, 2016, in New York City.  As a reader of this blog, when you register to join us with priority code EPHARMA16BL, you can save $100 off current rates!

Thursday, January 14, 2016

The Moonshot to Cure Cancer Embodies Basic Tenets of Patient Engagement

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During President Obama's final State of the Union Tuesday night, he charged Vice President Joe Biden with the task of curing cancer.
Last year, Vice President Biden said that with a new moonshot, America can cure cancer. Last month, he worked with this Congress to give scientists at the National Institutes of Health the strongest resources they’ve had in over a decade. Tonight, I’m announcing a new national effort to get it done. And because he’s gone to the mat for all of us, on so many issues over the past forty years, I’m putting Joe in charge of Mission Control. For the loved ones we’ve all lost, for the family we can still save, let’s make America the country that cures cancer once and for all. (Excerpt from the Daily Mail)
Mr. Biden will be in good company.

The Cancer Moonshot 2020 Initiative will be bringing together companies like GlaxoSmithKline, Amgen, and Celgene to accelerate immunotherapy researchIllumina also recently announced the creation of a new startup called GRAIL that will be working on a universal cancer detection blood test.

Biden published a piece on Medium, in which he asks citizens to share stories of how cancer has touched our lives. The plan he's laid out and the issues he sees with cancer treatment and research have been echoed by others living with all kinds of illnesses like Emily Kramer-Golinkoff and Matthew Might. Silos separate those who could help from those who need the help. Resources are lacking and research isn't being pushed out within enough time to really help people living now with these diseases.

As Biden points out in this piece,
Right now, only 5 percent of cancer patients in the U.S. end up in a clinical trial. Most aren’t given access to their own data. At the same time, community oncologists — who treat more than 75 percent of cancer patients — have more limited access to cutting-edge research and advances.
Patients having access to their own data has been a sticking point in the patient engagement world for the past several years. Hospitals and various companies can see our data, but often we cannot. We even have to pay for access to our medical records! The fees, even when reasonable, become unbearable for patients like myself who have multiple illnesses and issues.

You could easily purchase a nice car with that money

It's refreshing to see ideas that have been so integral to patient engagement in the last five years hit the national spotlight. I know I'll be writing to Vice President Biden regarding my husband's aunt, living on borrowed time with Metastatic Breast Cancer and, whether or not it goes anywhere, offering to do what I can to help with this initiative.

Resources:

http://www.forbes.com/sites/matthewherper/2016/01/10/a-single-blood-test-for-all-cancers-illumina-bill-gates-and-jeff-bezos-launch-startup-to-make-it-happen/#2715e4857a0b1955f691192e

http://www.ft.com/cms/s/0/70448e52-b7e4-11e5-b151-8e15c9a029fb.html#axzz3x8mRhJHi

http://time.com/4178517/cancer-state-of-the-union-joe-biden-obama/

http://www.dailymail.co.uk/news/article-3396857/Joe-Biden-cure-cancer-Vice-President-charge-new-moonshot-Obama-combat-year-losing-son-disease.html

http://www.msnbc.com/msnbc/joe-biden-cancer-initiative-personal-me

https://medium.com/@VPOTUS/inspiring-a-new-generation-to-defy-the-bounds-of-innovation-a-moonshot-to-cure-cancer-fbdf71d01c2e#.4jrbp67bp




About the author:

Kirsten Schultz is a health activist and blogger. You can read more about her life living with multiple chronic illnesses on her blog, on Creaky Joints, or follow her on Twitter.  


She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event.  ePharma will take place February 29 - March 2, 2016, in New York City.  As a reader of this blog, when you register to join us 

Wednesday, January 13, 2016

How a Digital Strategy can Help Healthcare Solve the Triple Aim

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By Peggy Salvatore MBA

I am writing this in possibly the biggest week for health tech junkies all year. Last week, the Consumer Electronics Show (now simply known as CES) rolled out acres of new tech toys, many of them in the health wearables space. This week, it’s all about investment in healthcare innovation in San Francisco for the invitation-only, highly-coveted JP Morgan Healthcare Conference. JPM16 is where the biggest thinkers and deepest pockets in the healthcare world converge to make deals that can change the direction of the industry.

Until recently, I was fond of using the term “evolution” to describe change in healthcare. That term needs to be jettisoned. It is just too soft. We are in the middle of a healthcare revolution as evidenced by the glut of health tech gadgets at CES and the amount of cash flowing in San Fran this week. The revolution will be nearly complete by 2020 when digital natives dominate the world.

This is very good news for pharmaceutical sales and marketing. Because just as new reimbursement models based on value and outcomes are dominating the payer landscape, we are going to be handed the tools to be able to reach patients and providers directly using their preferred methods of social media. And we will be able to measure – with precision – the effects of those efforts.

For a deeper dive on the changes in sales and marketing, and a perspective on their need to merge their efforts, read this PharmExec.com article by Todd Greenwood Ph.D, Sales & Marketing: Reaching the Unreachables.

Solving the Triple Aim – Once and For All

The Triple Aim. It’s shorthand for the healthcare conundrum of improving access, lowering costs and improving quality. I have recently seen the Triple Aim renamed the Quadruple Aim to include the improving the provider’s work experience. More on that next week. Whether you buy into the Triple or Quadruple Aim theory, digital health resources hold the promise to deliver results.

So, while it can safely be argued that the pharmaceutical industry has a public relations problem, it also has the clout to help solve the Triple Aim conundrum and put some of its much-maligned sales and marketing efforts into using digital health resources to:
  • Access: Reach more patients, even those who can’t afford healthcare
  • Cost: Improve things like medication compliance to keep down the high personal and financial cost of chronic disease burdens
  • Quality: Improve quality by using its sales and marketing power to deliver more targeted messages specifically where the data shows the greatest need.

These are just three ideas in a sea of thousands of ways that digital approaches by pharma can help solve some of healthcare’s biggest problems.

Imagine that pharmaceutical companies can go from Villain to Hero by moving some of the dollars they are already spending into areas where they can make a direct difference on outcomes. The providers and payers are going to be demanding outcomes for payment, and the use of the right drug, at the right time, in the right patient using targeted digital outreach and data collection is a critical part of that solution.



Peggy Salvatore MBA is a healthcare writer and trainer specializing in pharmaceutical managed markets sales training and health IT. She also has authored books and training programs on leadership and working with subject matter experts. You can read her blogs at www.healthsystemed.com and www.workingwithsmes.com

Tuesday, January 12, 2016

The Future of Patient Engagement

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The Systemic Juvenile Idiopathic Arthritis that I live with is a rare disease. It's difficult to diagnose and, in many cases, to treat. I know all too well the difficulties one can have living with a rare disease that is potentially fatal. I got into patient advocacy and volunteerism due to the fact that I have to constantly be my own advocate, at work or with my physicians. Since I see physicians in multiple medical systems, a fairly normal issue for rare disease patients, I have to keep track of everything on my own to compare notes with my providers. I have had to seek out physicians who have knowledge on my disease and connect with them, whether in an appointment or via email. I pore through journal articles every week, looking to find new things to share with the readers on my blog and with others living with SJIA or, the adult-onset counterpart, Adult-Onset Still's Disease.

I want to share with you today two rare disease champions who have been instrumental in changing lives due to their personal connections with these diseases. They do so without medical degrees, but with the knowledge and fighting spirit rare disease patients must have.

Emily is a White House Champion of Change and has been involved with Stanford Medicine X. She's also the founder of Emily's Entourage, an organization focused on accelerating Cystic Fibrosis research in order to give patients with rare mutations, like Emily, a better chance at a future.

She's been making the rounds, appearing on The Doctors this week, and she was recently on People to discuss her journey:


In September, I was honored to travel to Stanford University for their Medicine X conference which brings together all types of stakeholders in health care to discuss its future. Being run, in part, by patients, there is a large focus on how the health care system can engage patients and ways in which technology can be utilized to accomplish that goal.

Emily was one of the people I met while there. She is more amazing in person than you see here. Her story is one of resilience and perseverance.

Emily is incredibly unique, but she is not alone on her journey.

People with rare mutations or rare diseases have to do a lot more legwork in order to get a diagnosis, to raise awareness, and to get treatment.

Another great example is Matthew Might, who is on sabbatical from his programming professorship at the University of Utah to serve as a visiting professor at the Harvard University Medical School. He spoke at Medicine X in 2015 as well.

Matt's son Bertrand has been diagnosed with a rare condition called NGLY1 Deficiency. At the time of diagnosis, he was the only case doctors knew of.


As a blogger, Matt began to discuss his son's condition online. This led to finding others who later tested positive for the disorder, helping people to find a name to this collection of symptoms.

These two individuals are incredibly unique, and yet their stories bring up similar notions - the idea that crowdsourcing or crowdfunding could help to find diagnoses, treatments, and cures for many with rare diseases. In fact, the Rare Genomics Institute works on that idea by connecting patients with medical institutions willing to study their illnesses and develop treatments or cures.

The other shared idea here is how integral to our own health we can be. As Emily pointed out in her segment on The Doctors, she didn't want to wait around for the death she had been dealt. Matt couldn't bear to watch his son suffer. These are families affected by major illnesses that chose the advocacy route instead of apathy or ignorance, which would likely have been easier in some ways.

I believe this is the future of patient engagement and advocacy, where people educated on systems analysis become visiting professors at medical schools due to their fighting spirit, and where rare disease patients are able to raise awareness and funding to try to bring research and treatments up to speed for those who desperately need it.





About the author:

Kirsten Schultz is a health activist and blogger. You can read more about her life living with multiple chronic illnesses on her blog, on Creaky Joints, or follow her on Twitter.  


She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event.  ePharma will take place February 29 - March 2, 2016, in New York City.  As a reader of this blog, when you register to join us with priority code EPHARMA16BL, you can save $100 off current rates!

Friday, January 8, 2016

ePharma News: Check out Digital Pharma in numbers | Week 01/3 - 01/8

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Kim Kardashian's advertised Diclegis's brand awareness is up by 500%
500% is by how much Diclegis increased its brand awareness, after the FDA has issued a warning over K. Kardashian's drug promotion on social media.

$100 Million was raised by a Cancer Blood-Test Startup Guardant that on its website claims to be the only biopsy-free tumor sequencing test that tracks tumor genomics in real-time and identifies associated treatment options.

$4 Million is how much was raised by Kolibree, an electric
Bluetooth toothbrush that aims at educating kids on how to properly brush their teeth. Kolibree monitors in real-time the way a person brushes his/her teeth and alerts if the suggested time of two minutes hasn't been reached.

The FDA45 is the number of drugs approved by the FDA in 2015 according to the FDA's annual Novel New report. The FDA’s Center for Drug Evaluation and Research defines "novel drugs" as the drugs that are innovative and help advance clinical care.

$160k - $170k is the cost of the new pulmonary arterial hypertension drug Uptravi that got approved by FDA last month.


Stay tuned for our weekly news round up! 
Subscribe to our Blog or follow us on Twitter: @epharma 

About the author: Ksenia Newton, a Digital Marketing Assistant at IIR USA, Pharma Division, who works on various aspects of the industry including social media, marketing analysis and media. She can be reached at knewton@iirusa.com or on Twitter at @Ksenia_Newton

Join Us at ePharma Summit 2016

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By Peggy Salvatore MBA
 
For the next two months, Health System Ed will be blogging about the ePharma Summit 2016 that will be held in NYC from February 29 to March 2. Check out the conference details here. With my background writing pharmaceutical sales training and marketing materials, coupled with my enthusiasm for the promise of technology to advance healthcare, the ePharmaSummit is a natural fit.

For the past 15 years, the ePharma Summit brought together pharmaceutical companies, marketing consultants and digital gurus to explore the potential for harnessing data and technology to meet the needs of patients, providers and payers. In just the last year, the health tech revolution is fully raging and so this year promises to be a benchmark year for discussions and concepts to bring pharmaceutical strategy fully in line with technological capabilities.

In fact, last year one speaker noted that the trend toward complete integration of technology into pharmaceutical marketing portended that ePharma could drop the words “digital strategy” from its tagline now that all strategy has a strong digital component.

We are going to explore the kinds of pharmaceutical products and services delivered in a digital format that would enhance healthcare.

Using technology:

·         How can pharma better deliver disease state information?

·         What is the best format for product information?

·         How can we better support payment and reimbursement?

·         How can we improve patient assistance programs?

·         What kinds of programs will help support the value proposition for the coming wave of outcomes-based payments for your ACO?

·         In general, what ways can pharma strengthen its partnership with payers, providers and patients utilizing digital assets and social media?

Pharmaceutical marketing, like all great marketing, is a two-way conversation.  Pharmaceutical companies have the ability to leverage technology, social media, virtual worlds and web, video and audio assets to increase patient access to care, reduce the cost of care, and boost provider productivity and quality.

At the ePharma Summit, people who can initiate those changes will be kicking around ideas like these. Do these challenges speak to your concerns? Tell us in the comment section below.


Peggy Salvatore MBA is a healthcare writer and trainer specializing in pharmaceutical managed markets sales training and health IT. She also has authored books and training programs on leadership and working with subject matter experts. You can read her blogs at www.healthsystemed.com and www.workingwithsmes.com

Thursday, January 7, 2016

The Pros & Cons of Advertising Pharmaceuticals From a Patient Point of View

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In November 2015, the American Medical Association called for a ban on advertisements for both medications and devices. As an engaged patient, I have very mixed feelings about this idea.

Reducing ads could, as the AMA hopes, help to reduce both demand and pricing for drugs. It can also help to reduce the process that makes a person feel medications are necessary for everything, which is the same mindset that contributes to the overuse of antibiotics in upper respiratory infections.

As a part of this, the AMA is looking into launching a task force to work on drug prices - something that is so needed, especially in the wake of people like Martin Shkreli raising prices for life-saving drugs.

It's also worth noting that the only other nation allowing direct-to-consumer pharmaceutical advertising is New Zealand.

This move would appease some patients as well, tired of thinking taking a medication will make them as sporty as a professional golfer only to be disappointed in the end... or, like myself, yelling at the ads for medications that haven't helped when they pop up.

Patients often believe, whether through their own accord or through the way ads are worded and framed, that these medications will cure them. The disappointment when that doesn't happen can actually influence the patient's health.

It's happened to me enough times.

Still, some ads are getting better. Some pharmaceutical companies have started to hold focus groups with patients to preview ads and give feedback which is both smart and a nice way to bridge the gap.

Taking away these ads will be detrimental to some patients.

While the medication I'm on now to control my Systemic Juvenile Idiopathic Arthritis (SJIA) isn't advertised, I had a hard time getting on it. It's unfortunate because, along with being one of the only FDA-approved treatments specifically for SJIA, this drug has gotten my inflammation markers to the low-end of those experienced by a person without an autoimmune or autoinflammatory disease - something that I haven't experienced since November 1994.


Being an engaged patient, I brought journal articles and notes from a conversation with a highly regarded pediatric rheumatologist who is an expert in SJIA regarding this medication. My rheumatologist at the time was not well versed in this specific illness or the medications. I stayed for a while, trying to plead my case, but eventually had to move on to a new rheumatologist.

Advertising gives patients without access to journal articles and studies, often blocked by paywalls, the ability to learn more about a medication that could very rightly help them. That patient can then investigate the drug's website, check a site like drugs.com that gives full information for physicians and patients, or ask friends and family if they've had positive experiences with this drug.

One thing is for sure - pharmaceutical ads need to change with the changing healthcare climate. Patients want and need to be more engaged in their care, which means knowing the truth about medications, good and bad.

In my perfect world, there would still be some pharmaceutical ads. However, what is portrayed would change. Real patients would be involved, speaking the truth on their experiences instead of from a script. There would be forums on the drug websites where you could discuss side effects, as well as links to open access journal articles and drug information sites. Diversity, something lacking especially in inflammatory arthritis medication ads, would be prevalent. I could see someone younger than 40 taking an arthritis drug!

Hopefully, this will change in time so that we don't have to explain to my three-year-old niece what erectile dysfunction is.



About the author:

Kirsten Schultz is a health activist and blogger. You can read more about her life living with multiple chronic illnesses on her blog, on Creaky Joints, or follow her on Twitter.  


She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event.  ePharma will take place February 29 - March 2, 2016, in New York City.  As a reader of this blog, when you register to join us with priority code EPHARMA16BL, you can save $100 off current rates!

Monday, January 4, 2016

How Can We Measure Patient Engagement Levels?

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In the healthcare world, there is often discussion surrounding the need of patients to become engaged in their own care as well as how healthcare systems and providers can encourage engagement. This is especially true for those of us living with chronic illnesses which, according to the CDC, is now roughly half of the adult population here in the United States.

There is often a question as to how we can really track the engagement of the patient.

Earlier this decade, a group of professors at the University of Oregon developed a way to do just that - the Patient Activation Measure (PAM). PAM asks a series of 22 questions that help sort patients into four levels of activation. At the time this measure was created, the thought was that patients who are more activated and engaged in their healthcare will be able to care for themselves more effectively.

In March 2015, one of the originators of the PAM, Judith Hibbard, along with additional colleagues, conducted a study to test this hypothesis. Over a two-year period of time, the majority of patients studied stayed on the same activation level. There was some movement, though, in both directions. Health outcomes were also studied, with results indicating that the original hypothesis was true - not only is the activation level for a patient an indicator of future health, "health outcomes tend to change in the same direction [if there is movement], and costs follow as predicted" (Greene 2015, Pg 436). In fact, "less activated patients are almost twice as likely as more activated patient to be readmitted to the hospital within thirty days of a discharge" (Greene 2015, Pg 432).

The difficulty here is that those who have higher PAM scores tend to be those with higher education and socioeconomic status. How can we extend this idea to fit more of the patient world? After all, many of us live in poverty whether due to not being able to work at all or as much, living on disability, or the amount of money we have to spend on our medications and treatments.

We could discuss the strides being made to get internet access to all, including libraries having computers and even hotspots to check out and take home. However, then we need to consider the barriers to engaged patients who do their own research or track data. There are many providers who do not welcome these, let alone pictures of rashes and the like.

Patients, pharma, physicians, clinical staff, and more need to start thinking about what we can do to help each other become more knowledgeable about health. After all, 86% of health costs in 2010 were due to chronic illness.

Resources:

CDC - http://www.cdc.gov/chronicdisease/overview/

Hibbard 2004 - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1361049/

Gonzalez 2016 - http://www.npr.org/sections/alltechconsidered/2016/01/03/460962121/for-internet-to-go-check-the-library

Greene 2015 - http://content.healthaffairs.org/content/34/3/431.full




About the author:

Kirsten Schultz is a health activist and blogger. You can read more about her life living with multiple chronic illnesses on her blog, on Creaky Joints, or follow her on Twitter.  


She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event.  ePharma will take place February 29 - March 2, 2016, in New York City.  As a reader of this blog, when you register to join us with priority code EPHARMA16BL, you can save $100 off current rates!