Know that feeling when you’re zooming along Amtrak’s Northeast Corridor route, and the wifi keeps going on…and off…and on…and off? Crappy train wifi is one of the TWTW team’s top five pet peeves.

Well, hold on to your hotspots people, because relief isn’t coming soon. In an interview with the WSJ this week, Amtrak’s CEO Richard Anderson acknowledged that he recently scrapped a plan to improve wifi service along the NE route.

That’s the sound of working people from DC-to-NYC-to-Boston all sighing at once.


THE WEEK THAT WAS

Monday

 Nothing like a little #healthcarepolicydrama to welcome everyone back from a sleepy holiday week. On the exact day the HHS-proposed rule for drugmakers including list prices in TV ads was set to go into effect, a federal court struck it down. The court’s ruling asserted that HHS has no explicit authority to make drugmakers disclose price, and in proposing the rule, had overstepped its authority. Bonus points for the reader that can make #healthcarepolicydrama trend on Twitter.

Tuesday

 ICER loves creating a little suspense, and they did just that with the release of their potential 2020 review topics. Potential review candidates include therapies in breast cancer, hemophilia A, HIV and MS. ICER put the emphasis on potential, noting, “It is possible that not every topic listed here will be subject to an ICER review, just as it is possible that ICER may review other topics not included on this preliminary list.” Which is HEOR-speak for “sleep with one eye open.”

Wednesday

 John Carroll at Endpoints covered somerecent comments from the FDA’s head of the Center for Drug Evaluation and Research, Janet Woodcock, about the drug development and review process. Some areas of particular interest to the agency? Encouraging drug developers to pursue basket studies, integrating patient-reported outcomes in trial design and recognizing neuroscience as an “up and coming” area.

Thursday

 Axios reported that the Trump Administration plans to withdraw their proposal requiring Pharmacy Benefit Managers (PBMs) to pass through the rebates it negotiates on behalf of Medicare directly to patients. The concept was strongly supported by drugmakers and would have undermined the PBM business model. Our colleague Peter Pitts shared his thoughts on the decision in an op-ed for STAT this week.  

Friday

 A new paper from the Pacific Research Institute reported on biosimilars, finding that the therapies are far from reaching their potential in terms of market share and cost savings. The 7 biosimilars on the market today have created nearly $254M in savings. That may sound like a lot, but most of those biosimilars have less than 10% of their respective markets. Plus, there are 12 biosimilars that have been approved but aren’t being marketed.

 

Syneos Spotlight

Our very own Michelle Leeds was featured in a recent MM&M piece, alongside a number of our Syneos Health  colleagues, discussing how today’s radically transformed market landscape impacts pricing, access and an overall commercialization strategy.

Patient data: Can't live with it, can't live without it

Over here at TWTW-headquarters, we’ve got a knack for seeing risk wherever we look. This makes us very fun at parties. It’s also made us increasingly wary of data privacy in healthcare, especially when it seems like every day there’s a new health-tech product or partnership.

Of course, we’re far too polite to ever say “told you so,” so instead we’ll just refer you to the subject line of Rock Health’s weekly newsletter: “The healthcare techlash is here.”

At the center of that backlash is, unsurprisingly, patient data. In their analysis, the Rock Health team found that patients are becoming increasingly wary of sharing their data with healthcare entities.

Based on recent reporting, there’s little reason to think patient trust is about to start trending upwards. Just take a look at some recent data snafus:

  • The University of Chicago and Google are facing a class action lawsuit, alleging that they shared identifiable patient data. The allegation stems from a 2017 partnership between U Chicago and Google, which intended to “use patients’ electronic medical records to try to make better predictions and advance artificial intelligence in medicine.” The patient data shared by U Chicago included doctor notes and check-in and check-out dates.
  • The DNA-testing service Vitagene, left more than 3,000 client health reports accessible to the public via Amazon Web Services servers for years. The records included “customers’ full names alongside dates of birth and gene-based health information, such as their likelihood of developing certain medical conditions, a review of the documents showed.”
  • “Sleep apps” and “smart beds” – tools designed to help people get a better night’s sleep – have come under fire for their ambiguity about data sharing. Unease with these tools only increased after Sleep Number’s CEO Shelly Ibach spoke at the Fortune Brainstorm Health conference and noted that user data is critical for the company’s algorithms.


New policy efforts:

New bipartisan legislation, the Protecting Personal Health Data Act - was recently proposed in the Senate. The bill would put new regulations on wearables, apps and genetic testing kits. It would also establish new requirements for companies “to let patients access, change, and delete health data.”

Potential industry impact:

For most actors in the healthcare space – be they small healthcare startups, established insurance providers, pharma companies or Big Tech dabbling in healthcare – data is becoming increasingly critical for business success. If patient trust in these groups’ ability to protect their data continues to decline, these entities could see their innovation and growth stifled.

Some advice from your fave party guests:

  • Transparent communications about data collection, management and protection can’t be an afterthought. A company’s approach to data must be communicated directly with every new initiative.
  • Don’t leave any “grey area” when it comes to your data policy or what you communicate to patients and partners.
  • Explain why collecting and sharing data is important. Will it help better treat patients in the future or diagnose conditions earlier? Will it improve outcomes for the very patient sharing their data?
  • And – for good measure – some time-honored parenting advice: treat others[’ data] how you’d want [your data] to be treated. 


Who wrote this? The managing editors of TWTW are Dana Davis, who can’t even get phone service on an Amtrak and Randi Kahn, who found a 2002 AP Style Guide book when moving apartments this week.

Syneos Health Communications' Reputation & Risk Management Practice is a team of healthcare communications consultants, policy-shapers and crisis response specialists. We provide unique solutions to the evolving communications challenges in today’s healthcare industry, using evidence-based approaches to help our clients successfully navigate the most sensitive of situations.

Got thoughts? Contact Dana Forward ThisblankSend to Linkedinblank

Did someone forward this to you? You’re so lucky! Sign up to receive TWTW every week.

Feeling nostalgic? We get it. Check out old TWTW issues here.

blank

And now please enjoy this disclaimer that prevents our team from getting in a heap of trouble: This report may contain links to external or third party websites. These links are provided solely for your convenience. Links taken to other sites are done so at your own risk and Syneos Health accepts no liability for any linked sites or their content. Syneos Health makes no warranties or representations, express or implied about such linked websites, the third parties they are owned and operated by, the information contained on them or the suitability or quality of any of their products or services. Syneos Health does not authorize the infringement of any intellectual property rights contained in material offered through these linked sites. Please refer to the use agreement and/or copyright statements of any external site you visit, or the terms and conditions of any externally provided web site for instructions, restrictions, and guidelines. If you have a question, please contact the webmaster of the external site.


About the Author:

Dana Davis is a strategist in the Reputation & Risk Management Practice, where she helps biopharma clients communicate the value they bring to their stakeholders. Her expertise lies in issues of corporate activism; advising companies that must respond to activist tactics from patients, employees, or investors, as well as companies looking to take a proactive stance on social issues.

Syneos Health Communications' Reputation & Risk Management Practice is a team of healthcare communications consultants, policy-shapers and crisis response specialists. We provide unique solutions to the evolving communications challenges in today’s healthcare industry, using evidence-based approaches to help our clients successfully navigate the most sensitive of situations.