Tag Archive for: Patients As Partners

What’s a Patient Scientist?

I recently attended a conference called “Patients As Partners” which focused on the benefits of Pharma companies using patients early during the development of clinical trials.  One company (I don’t remember which one) said that they had begun referring to patients in this role as “patient scientists”. I hadn’t heard this term before but it struck me as profound to the point where I even tweeted about it…and I don’t tweet on a regular basis.

Why did I find this term so encompassing?  First a bit of background.  I was diagnosed with a blood cancer called Multiple Myeloma and given 2-3 years to live.  That was 23 years ago but with lots of treatment…chemotherapy, 3 transplants (including one allogeneic transplant using donor stem cells), several rounds of radiation and 2 clinical trials.  During the last 15 years I’ve become quite active in myeloma: facilitating our local San Francisco Bay Area myeloma support group, volunteering with several myeloma advocacy organizations, and attending medical conferences like the annual American Society of Hematology and International Myeloma Working Group conferences.  And most recently, I’m helping provide a patient perspective during the design and approval of myeloma clinical trials for SWOG (a National Clinical Trial Network group) and the National Cancer Institute.

At these conferences and clinical trial meetings, almost all the attendees are MD’s and PhD’s and it can honestly be quite intimidating to ask questions and make suggestions. But then I heard the phrase “patient scientist”. In fact, none of those doctors in the room have the expertise that I do being a myeloma patient. None of them have been treated with chemotherapy, had a transplant, or been the “recipient” of a dozen bone marrow biopsy/aspirates. I really am an expert, or “scientist”, in being a patient, having experienced the physical and mental demands that go along with trying to survive with good quality of life.  And by sharing experiences with other patients, I’m able to offer a valuable perspective when designing future trials.  As a “patient scientist”, I take very seriously my role and the responsibilities that go along with it. And I’m always appreciative that those MD’s and PhD’s consider my input as they do each others.

Patients as Partners Attendee Julie Walters on Putting the Patient First

Julie Walters discusses the Patients as Partners Event. Blog from our parters at The Conference Forum.

Putting the patient first: Time to stop talking & start doing

It’s rare that you find yourself in the right place, at the right time, with the right people. But it happened last month.

I was part of a small but determined group of people in Philadelphia ready to mount the pharma barricades and, in our view, talk sense.

The event was not just another industry conference. This one was called Patients as Partners and, now in its third year, it meant business.

The pharmaceutical industry doesn’t mean to be inhumane, but sometimes it just is. Regulations have tied good people so much in knots so that the following happens:

  • No outcomes shared from clinical trials, even to those who helped to run the trial. It’s like taking part in a marathon and being told you couldn’t know your finish time
  • No thank you’s to the real people who took the time and considerable energy to take part and try new medicines in development
  • No personal data shared of sometimes invasive procedures like MRIs and X-rays. It’s like your data became someone else’s property at the doctor’s door

It’s nonsense, but how do we change such bad, ingrained habits? Like anything in the world, change takes a small but committed group of people.


As one person put it so simply and clearly:
How would you like your mother to be treated if she took part in a clinical trial?


Someone saying thank you at the end of the process would seem a good start.

Trailblazers are starting to make a difference: patient data delivered in real time to those who took part even while a trial is still ongoing. Yes it is possible! Not easy, but possible. Families affected by a condition in the same room as those developing new treatments so they can learn from each other. The lawyers are not comfortable but again it can be done. It has got to be better than observing patients talking about living with their condition from behind a two-way mirror. Not so much patients as partners; more patients as criminals.

The industry’s behavior is motivated by fear; fear of getting it wrong, fear of going too far, fear of being accused of trying to sell a family a drug years before it’s even been tested (yes really!) and fear of their career coming to an abrupt stop.

I understand how it’s come about but this fear-based approach is no longer fit for purpose in a world that now has the technology to truly share experience and knowledge.

So if your colleague attended #Patients2016, ask how you can help & wish them luck. We’ll need it.

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” Margaret Mead

Tag Archive for: Patients As Partners

Patients as Partners US

The 5th annual Patients as Partners program is the only conference in the US that demonstrates how to involve patients throughout the entire medicines development life cycle to drive greater efficiencies in clinical research.

Featured Speakers

Ken Getz, MBA
Tufts CSDD, CISCRP
Roslyn Schneider, MD
Pfizer
Mary Stober Murray
Bristol-Myers Squibb
Beth Zaharoff
Tesaro
Marc Boutin, JD
National Health Council
Geraldine Blavat
Patient and Advocate
Stefanie Joho
Survivor and Advocate
Meyer Carol colorCarol Meyer
Takeda

– Overview –

Patients as Partners is co-produced with patients, industry, academia, government and nonprofit organizations to establish a well-rounded program that addresses the needs of all stakeholders seeking to implement and advance patient involvement across the entire clinical development continuum.

  1. Patients as Partners US is accredited by Patients Included and addresses what matters most to patients to enable them to support clinicalresearch:
    1. Understanding and incorporating the patient’s voice in designing clinical trials and developing a clinical endpoint
    2. Vastly improving the patient’s entire experience in a clinical trial
    3. Empowering the patient in the new medicines development process
  2.  We are pleased to bring back “Ask the Patient” to Patients as Partners US, a program representing a group of individuals who’ve experienced a clinical trial.These patients, our Medical Heroes, will be available to answer questions about their clinical trial experience. It is a great opportunity to learn about the realities of a clinical trial directly from the patient’s point of view. They will have a badge identifying their participation and will be available throughout the conference. We will also have an area in the exhibit hall to meet them during breaks.
  3. The conference room will be set up in rounds for easier interaction and each table will be provided with a paper “Tool-Box” and an assortment of specially designed materials to help capture ideas.
    • Each session will conclude with a list of key take-aways presented from the session representative.
    • Result: Each attendee will walk away with a toolbox full of ideas that will support their patient involvement initiatives.

Turning  Discussion Into Action

Dr Theresa Mullin, FDA, delivered a progress report on PDUFA VI and an update on the new performance and procedural goal at the 2017 conference.

Ken Getz, Tufts CSDD, CISCRP, delivered a presentation on raising awareness in clinical research at the 2017 conference.

Marilyn Metcalf, GSK, led a patient and researcher panel on the medicine information exchange at the 2017 conference.

A multi-stakeholder panel addressing patient and industry needs in medicines development.
From left to right: Ken Getz, Tufts, CISCRP, T.J. Sharpe, Patient and Advocate, Durhane Wong-Reiger, PhD, Canadian Organization for Rare Disorders, Jean McCoy, Health Advocacy Strategies, Janet Freeman-Daily, Lung Cancer Patient and Activist, Marilyn Metcalf, GSK

 

A special thanks to our advisors for their unwavering guidance and expertise in helping us with the research to craft an in-depth agenda that puts the “discussion” around patient involvement into action across the entire clinical development continuum.

We look forward to seeing you in Philadelphia, March 15-16, 2018.

Sincerely,

 kate-bw-3Kate Woda
Conference Director
Valerie Bowling New 

Valerie Bowling
Executive Director

Meredith Sands
Executive Director, Business Development 
Manager
 

Kim Chin
Marketing Director

 elizabeth-bard-bw-2Elizabeth Bard
Business Development Manager
 jackiedt-bwJackie Della Torre
Business Development Manager
Nancy-BW-2 

Nancy Belis
Senior Conference Planner

Laura Mulchay 

Laura Mulchay 
Marketing Associate