By using this site, you agree to the Privacy Policy and Terms of Use.
Accept
Health Works CollectiveHealth Works CollectiveHealth Works Collective
  • Health
    • Mental Health
    Health
    Healthcare organizations are operating on slimmer profit margins than ever. One report in August showed that they are even lower than the beginning of the…
    Show More
    Top News
    stress management for healthcare workers
    3 Tips For Healthcare Professionals: How To Stay Beautiful, Healthy, and Happy
    November 2, 2021
    importance of relaxing on the weekend for your health
    Importance of Relaxing During the Weekend for Optimal Health
    March 25, 2022
    LASIK Eye Surgery
    What Is LASIK Eye Surgery?
    May 16, 2022
    Latest News
    6 Easy Healthcare Ways to Sit Less and Move More Every Day
    September 10, 2025
    7 Most Common Healthcare Accreditation Programs: Which Should You Use?
    August 20, 2025
    Hospital Pest Control and the Fight Against Superbugs
    August 20, 2025
    Hygiene Beyond The Clinic: Attention To Overlooked Non-Clinical Spaces
    August 13, 2025
  • Policy and Law
    • Global Healthcare
    • Medical Ethics
    Policy and Law
    Get the latest updates about Insurance policies and Laws in the Healthcare industry for different geographical locations.
    Show More
    Top News
    New Research on ACOs and the Accountable Care Opportunity
    July 31, 2013
    Mobile Health Around the Globe: Apps on Health Storified
    March 19, 2012
    cigna
    Cigna’s Decision on Genetic Testing Exposes Educational Gaps in Today’s Healthcare
    August 21, 2013
    Latest News
    Healthcare at a Crossroads: Why Leadership Matters More Than Ever
    September 9, 2025
    How Social Security Disability Shapes Access to Care and Everyday Health
    August 22, 2025
    How a DUI Lawyer Can Help When Your Future Health Feels Uncertain
    August 22, 2025
    How One Fall Can Lead to a Long Road of Medical Complications
    August 22, 2025
  • Medical Innovations
  • News
  • Wellness
  • Tech
Search
© 2023 HealthWorks Collective. All Rights Reserved.
Reading: Patient Engagement Explored at the ePharma Summit
Share
Notification Show More
Font ResizerAa
Health Works CollectiveHealth Works Collective
Font ResizerAa
Search
Follow US
  • About
  • Contact
  • Privacy
© 2023 HealthWorks Collective. All Rights Reserved.
Health Works Collective > eHealth > Social Media > Patient Engagement Explored at the ePharma Summit
NewsPolicy & LawSocial MediaSpecialties

Patient Engagement Explored at the ePharma Summit

MightyCaseyMedia
MightyCaseyMedia
Share
6 Min Read
patient engagement
SHARE

patient engagement

 

patient engagement

Snowflakes and Bitch-Slaps at the ePharma Summit

More Read

Image
Cardiac Rehab: Help After a Heart Attack
Gun Violence Restraining Order: An Idea Whose Time Has Come?
How Wearables Will Transform the Health Insurance Game
6 Tips on Maintaining a Great Online Reputation for Physicians
Enhancing the “Coolness Factor” in Our Later Years

patient engagement

 

patient engagement

Snowflakes and Bitch-Slaps at the ePharma Summit

I had the great good fortune of being asked (by WEGO Health) to participate on a panel titled Social Media for Pharma: A Match Made in Heaven or Hell? at the ePharma Summit in New York (#epharma) earlier this week. When the opportunity presented itself, I asked to be registered for the whole event so I could do my fly-on-the-wall thing by attending some sessions and schmoozing in the exhibit hall. What did I learn? I learned something I already knew: pharma, and healthcare in general, talks a good game at the corporate level about “engagement” when it comes to patients. However, their use of the word tends to run along engagement-as-shiny-object-syndrome lines; in other words, passive message consumption is the desired model, since two-way dialogues are problematic, with pharma afraid of FDA bitch-slaps in the form of warning letters and healthcare in general sweating bullets about the powerful bitch-slap known as the HIPAA violation, given the $1.5M fine potential. I understand their aversion to drawing the gimlet eye, and the ire, of the feds when they’re considering how to communicate with their marketplace. Pharma is a conservative, slow-to-innovate business that’s focused on shareholder value and ROI for said investors, given that they can spend billions developing a new drug for market before they can sell the first pill of said wonder drug. At least, that’s what pharma balance sheets and annual reports tell us. Pharma is anxious to open dialogues with its customers – the real customers, patients – but isn’t sure how to go about doing that without winding up in deep kimchee with federal regulators. That was the purpose of the panel I was on: to let pharma know what kind of conversation patients were looking for, and what we’d like to hear from the pharma industry. Our group members were:

  • Michael Weiss, Crohn’s Health Activist
  • Tiffany Peterson, Lupus Health Activist
  • Dee Sparacio, Ovarian Cancer Health Activist
  • Yours truly, wearing my Cancer for Christmas Breast Cancer Health Activist hat (along with several others, making me very distinctive as usual)

We all said that we would welcome some real dialogue with pharma: not sales language, but human language. Stop telling us to “ask our doctors about” – which is useful, but only half of the conversation equation. Pharma should ask patients how and if they – pharma and its products – are actually helping. The snowflakes in the post title aren’t the snowflakes that flurried a bit in New York on Thursday, they’re from my exhortation from the podium (and everywhere else):

“If we’re all snowflakes, unique in our genomic makeup and completely different from any other human on the planet, where’s my snowflake medicine?” 

I know that snowflake medicine is not only possible, it’s here: pharmacogenomics is a new science, but it’s in commercial use and has been for a few years. I’d like to know why it isn’t part of every single prescription decision, but I’m an impatient early adopter. I know that pharma is still operating on a population health model, but that is so 20th century, dudes. Real innovation is already happening, yet pharma’s business model is still in “find the blockbuster drug that works OK in 60-70% of the population with Disease X, and we’re in the money!” mode. My prescription for pharma execs is to read Eric Topol‘s The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care – that will both scare them to death (no more population-based medicine) and show them the map to the future (agile development of targeted therapies). Give me my snowflakes: me, and everyone else, are in some cases dying to get hold of ’em. My takeaway from #epharma? Patients are still seen as exotic creatures by pharma, but I sense that they’re anxious to learn more about us beyond our diagnoses. My recommendation: Look for influencer patients in the health communities that use your products. Open a one-on-one dialogue with them, ask them how your products are perceived. Explore opening up some private-channel community conversations (NOT on social media!) that can involve your clinical team, doctors who prescribe your products, and the patients that take them. Listen and learn. If you need help wrangling internet and social rules for pharma out of the FDA, tell us – patients – what you want to accomplish, and let us storm the castle. Embrace the snowflakes. Avoid the bitch-slaps. Help create better global health. Patients are the only real blockbuster drug left in the 21st century. Thanks for listening.

TAGGED:patient engagementpharma
Share This Article
Facebook Copy Link Print
Share

Stay Connected

1.5kFollowersLike
4.5kFollowersFollow
2.8kFollowersPin
136kSubscribersSubscribe

Latest News

a woman walking on the hallway
6 Easy Healthcare Ways to Sit Less and Move More Every Day
Health
September 9, 2025
Clinical Expertise
Healthcare at a Crossroads: Why Leadership Matters More Than Ever
Global Healthcare
September 9, 2025
travel nurse in north carolina
Balancing Speed and Scope: Choosing the Nursing Degree That Fits Your Goals
Nursing
September 1, 2025
intimacy
How to Keep Intimacy Comfortable as You Age
Relationship and Lifestyle Senior Care
September 1, 2025

You Might also Like

Medicare eligility and coverage
News

Demystifying Medicare: Understanding Coverage and Eligibility

April 4, 2023

2014 Medicare Payment Cuts for Radiology Services

July 29, 2014
Nutritionist
NewsWellness

How To Know If Your Nutritionist Is Legit

May 20, 2021

Physicians Should Be Part of Online HealthCare Discussions

March 26, 2012
Subscribe
Subscribe to our newsletter to get our newest articles instantly!
Follow US
© 2008-2025 HealthWorks Collective. All Rights Reserved.
  • About
  • Contact
  • Privacy
Welcome Back!

Sign in to your account

Username or Email Address
Password

Lost your password?