Two Boston meetings look at the role of patient advocates. They offer two very different perspectives.


Pharmaceutical manufacturers often  look to patient advocates for help winning approval for new drugs. Their most recent success in this area was the FDA’s approval of a new drug for Duchenne muscular dystrophy. That decision came despite recommendations against approval from FDA staff.

In an editorial, the Boston Globe questioned the FDA’s move while noting that eteplirsen’s “entry into the marketplace represents a major victory for the patient advocacy movement, and is bound to encourage more such engagement in the drug-approval process. Based on the infighting that went on over the Duchenne treatment, that’s going to be challenging for the FDA. It has to find a balance between public opinion and what’s truly in the public interest.” (The Globe also featured a story this week about one of those patient advocates.)

Today, drug makers in Boston are hosting a conference for patient advocates. The “Patient Advocacy Summit 2016 – Sharing Our Stories: Building a Patient-Centered Ecosystem” is underway at Novartis facility near MIT.

This event brings industry leaders together with patient advocates and other stakeholders to examine ways in which life sciences companies can more fully incorporate the patient voice into the work they do— not just approaching regulatory applications or at commercialization, but throughout the drug development cycle.

The day-long event will include panel discussions, case study presentations (spotlighting industry/patient partnerships), a keynote address, and awards ceremony, as well as a networking breakfast, lunch and cocktail reception. Expected attendance is 180 patient advocacy professionals, patient organizations and other stakeholders.

Worth noting that the same topic was the subject of  yesterday’s  panel at HUBweek, a  science/tech/arts series ongoing in Boston. The title: “The FDA and the Drug Approval Process: Is it Really Broken?”  Some made the point —  we should listen to the parents of sick children.  Others offered a different perspective: Patients might be better off in clinical trials with informed consent and free drugs,  rather paying  $300,000 per year for that same, unproven medication with unknown side effects.

Contacted after the panel, Zuckerman, president of the National Center for Health Research in DC,  offered these thoughts:

  1. Patient perspectives are crucial in helping us understand what scientific data mean, what the benefits and risks both mean to patients.  So patients should be part of the process – what should the outcome measures be and how can they be measured?
  2. The FDA is listening to patients who desperately want treatments but they are not listening well to patients who are harmed by ineffective or unsafe treatments.  That’s partly because the former are funded by Pharma to attend FDA meetings and to lobby Congress, but the latter are on their own, often don’t have the money to attend FDA public meetings, and wouldn’t even know about them if they don’t read the Federal Register, which is the only place they are announced in advance.

 A few more tweets worth noting.



Compare Massachusetts doctors via quality reports and patient feedback

CR MA. Doc Ratings Insert_300Searching for health care services on the Internet can be like searching info about food, hotels or pets. You have to sort through a lot of low quality or scraped sites that don’t offer much.

Healthcare Compass looks like a good destination for Bay Staters.

On this website, there are two different ways to compare doctors’ offices:

  • A survey of more than 40,000 patients across Massachusetts that collected details about the care they receive at their own doctors’ offices.
  • Reports that measure how well the doctors’ offices achieve nationally recognized standards for high-quality primary care…

This website helps patients answer two questions about their health care quality:

Are primary care doctors giving their patients the correct preventive care services (such as cancer screenings) and chronic disease care (such as asthma or diabetes care)? The Clinical Quality report looks at how this of care was given to patients at doctors’ offices.
Learn more about the Clinical Quality Report

 How are patients’ experiences with their doctor office? Does their doctor’s office know about them and the care that they should be receiving? The Patient Experience Survey is a statewide survey that asks patients to report about their experiences with a specific primary care doctor and with that doctor’s office. 

Learn more about the Patient Experience Survey report


Also, click here for a source of raw data: Patient HealthDecider 


Tweets from Boston meeting on health, the Internet and mobile communication

Check out #chs11 f for tweet from the Connected Health Symposium in Boston. Each year, Partners sponsors this meeting to look at how the Internet and mobile communication are changing the health care system.  Here’s a link to the Tweetstream and a few samples below from a session on social networking and health.

RT @MGHDiabetesEd: “online patient communities can increase engagement, decrease isolation.” #chs11
October 20, 2011
@taracousphd at #SoMe panel at #chs11: 35% of young people search for #healthcare informaton online
October 20, 2011
Giving patients the choice to use an alias-based identity on social networks is a key way to address privacy concerns #chs11
October 20, 2011
@dsgold How so? Alias identity does not equal unidentifiable, does it? I’d be concerned this is a false sense of security. #chs11
October 20, 2011
Facebooking health @taracousphd facebook campaigns have huge opportunity for reaching teens, can use it for health literacy #chs11
October 20, 2011
@lisagualtieri : There are credit #literacy programs for teenagers, why not more health literacy ones? #chs11
October 20, 2011
We need to be inter-generational in our social media “prescription” including seniors as well as youth #chs11
October 20, 2011
Social media can help make a disease more than just a disease for teens @drjosephkim #chs11
October 20, 2011
@drdannysands telling about how he prescribed acor to @epatientdave & it save his life #chs11 #s4pm
October 20, 2011
Next up, Facebooking Health moderated by my wonderful #TUSM colleague @lisagualtieri #chs11
October 20, 2011
@meyouhealth Chris Catter shows first ever social graph to visually render well-being among participants in social networks #chs11
October 20, 2011
CDC traditional data tracked same as social media during H1N1 #chs11
October 20, 2011
should MDs, nurses, etc recommend online pt communities? -yes! #chs11
October 20, 2011

In Cambridge, Mass., an “unconference” on #healthcare and the web #hit #healthfoo

“Unconference, ” “NERD center” and “Health Foo.” Find our what all that means and more in report on last weekend’s  Cambridge, Massachusetts meeting on health care and the web.

Or, as defined by the site “a cross-discipline, immersive, informal ‘unconference’ that will take advantage of a growing interest in applying Web 2.0 and open-source thinking in health care to spark ideas that can expedite changes in the ecosystem of health care services.”

On, poster Susanna Fox describes a session on why Google health failed and Cambridge-based Patients like Me succeeds. Fox is the “associate director of the Pew Internet & American Life Project and author of the Project’s survey reports on e-patients and online health”

–          Google created a private record, which was off-mission for Google since they do a great job of connecting people and aggregating data.

–          The ecosystem wasn’t ready and Google got “big company disease” so they bailed too early.

–          There are no lightweight solutions for such a broken system.

–          An EMR is the hardest problem to tackle and the least interesting for most consumers.

–          Google failed to make it easy for people to import data and use it.

–          Useful analytics, like’s, would have been a saving grace.

–          A counterview: The minimal use case was compelling enough – an easy way to see last year’s test results next to this year’s. Just to see the data is enough for some people.

–          Outside the U.S., EMRs and health data tracking helps trigger vaccination reminders – another simple use case that is compelling to people.

–          Google was late or unable to get the developer community excited.

–          Companies need to come to the game with someone in mind, someone whose problem you want to solve.

–          PatientsLikeMe’s 4 keys: 1) the platform has to be awesome; 2) someone has to care about the individual; 3) understand what is meaningful about the problem being solved; 4) do research, help people take action.

–          This space is not about apps. It’s about a use case, a value proposition like “this will help you save money” or “this will help avert disaster.”

–          A successful future initiative would do well to focus on babies. Pregnancy and parenthood are gateway moments in people’s lives.

–          Let the data flow and the technology will work itself out.