Oct 22, 2018

Reflections from MassBio's Patient Advocacy Summit Steering Committee

Patients are at the heart of everything we do – both for MassBio and the member companies we serve. We’re all driven by the urgency to find new treatments and cures to improve the lives of patients around the world. We’re all #PATIENTDRIVEN®.   

Now in its 5th year, the MassBio Patient Advocacy Summit convenes hundreds of industry professionals and serves as a day dedicated to reminding all of us why we’re in this industry. We asked those that have been instrumental in planning this event, “Why are you #PATIENTDRIVEN®?” Here’s what they told us: 

“Ironically, I found myself pondering the question “why I’m #PATIENT DRIVEN” on my arduous and frustrating commute home from a long week of work. When I started thinking about this question, my commute became meaningless. Understanding the burden patients face in their day to day and potentially delivering positive impact is incredibly meaningful. A few years ago, I heard Paul Levy, former CEO of Beth Israel Deaconess Medical Center, talk about being “patient driven” in an evolving “patient centric” world. It is an important distinction because if healthcare is patient centric, the patient is at the center, but decisions are made by others. In a patient driven world, the patient is in charge. This perspective changed my approach to patient advocacy. For a long time, my work energy was focused on creating patient centricity within my organization and driving clinical development to be patient centric. Now, I know it is more important to listen and learn from patients and have their input drive decision-making. It is thinking about how we meet patients where they are instead of trying to make them meet what we need. The result is building a model where patients ultimately have access to information, meaningful medicines, and care delivery that meets their needs.”

         – Wendy Erler, VP Patient Advocacy, Wave Life Sciences & Member of MassBio Patient Advocacy Summit Steering Committee

“All I need to do is speak with a patient, caregiver or healthcare provider and see how novel medicines impact lives in order for me to get excited about the industry in which I work. I spoke to someone just this past week who is a cancer patient with a rare cancer. When she was diagnosed her prognosis was grim and without much hope of long-term survival; in fact the norm for survival of her cancer was between two and three years. That was over 20 years ago; and although she has had a few relapses during that time the work being done in oncology clinical development and the development of even more refined medicines to treat her illness has allowed her to prolong her life and live it with unexpected quality. Her moving story is just one of the millions from patients who benefit from an industry and people working within that realm who are patient-driven.”

          – Paul Kidwell, PR Consultant & Member of MassBio Patient Advocacy Summit Steering Committee

“We are all patients. Some of us have rare diseases while others develop chronic conditions that are all too common. I am patient-driven because I know in Boston we have the special elements required to change the livelihoods for those who suffer through philanthropy, industry, academia, and policy and I want to be part of the solution for diseases that have taken away so many family members in the past, currently impact my family today, and will affect us in the future.”

          – Robert Schultz, Consultant & Member of MassBio Patient Advocacy Summit Steering Committee

“#PATIENTDRIVEN, to me,  is a wholistic way of thinking about the health care ecosystem –  drug developers/manufacturers, patients, caregivers, physicians, researchers, patient groups, health authorities, and payers.

  • #PATIENTDRIVEN takes into account the multiplicity of interests, demands and priorities that swirl around for all stakeholders trying to get the right medicine to the right patient at the right time.   
  •  #PATIENTDRIVEN lives in the context of the country, company, community of people in dialogue with each other about that question – who needs what in order to live the fullest life they can?
  • #PATIENTDRIVEN means that if we put the patient at the center of everything we do, regardless of where we sit in any given disease community, decisions will be made well, and progress will follow.    
  • #PATIENTDRIVEN can mean we ask ourselves “Is this the right thing for patients?” when setting strategy. It can also mean asking ourselves, “How best do I represent the patients’ interests in this conversation?” and then doing so;
  • …or it can mean seeing beyond the patient to the humanity of the PERSON living with disease.  Acknowledging that. Speaking to that person or on that individual’s behalf.   

I am #PATIENTDRIVEN most likely because I was raised as a humanist, both personally and professionally. Regardless of which job I am doing in which company or country, my focus is on the people.  What do they need? How do I help?  That’s Why I’m #PATIENTDRIVEN.”

          – Gabriella Salvatore, Patient Advocacy at Takeda & Member of MassBio Patient Advocacy Summit Steering Committee

Register for MassBio's Patient Advocacy Summit on Nov. 2nd in Cambridge!

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