Blog

 

New Perspectives

When I was asked to consider the opportunity to give the patient keynote at the MedtechVision conference admittedly I had no idea what I was getting myself into.  The conference was coming on the heels of the European Society of Cardiology meeting and often I find the time requirements of my desire to help others to be in direct conflict with the needs of my family.  Could I really fit one more patient advocacy activity in at the end of an extremely busy summer, and if so would it be with 200 women … from industry?  Not being much of a lady, a joiner, and oh, “the” patient amongst a sea of industry professionals, I was admittedly a bit skeptical.  But it has always been in my nature to try to see the world through the eyes of others and so I went forward with a meeting with the MedtechWomen founders perhaps out of morbid curiosity.

I had an investigational conference call with Deb Kilpatrick, Amy Belt and Nicole Osmer, whom I credit with “discovering” me on an FDA panel, where we did our best to politely interrogate each other and tease out any red flags.  After all these were women from industry and as the patient I was wary of their hidden agenda.  Question #1:  Did they really want to hear a patient’s ideas on how we can move through troubling times or were they looking for someone to fill a token role that would amount to nothing more than lip service?

After thoughtful discussion and their impassioned description of MedtechWomen’s mission, they easily had me through the first gate.  They really did believe we are all working toward the same goal of improving patients’ lives and this commonality could be a beacon in the muddled times we are suffering through now.  Then we were on to question #2:  would this be a waste of time?  Were we getting together to whine about how broken the system is and how frustrated we all feel or would real progress be made?  We discussed our philosophies and quickly found common ground under the guise of see-a-problem, solve-a-problem and the caveat that all stakeholders bear responsibility for the current state of affairs.  Each of us is right in some way and each of us is wrong in some way.  We can all strive to be more accountable and true change can be made through compromise if each party is willing to give.

With these shared values I was excited to sign on and I am happy to report their historic wait-listed launch event didn’t disappoint.

The synergy at the MedtechVision conference was amazing.  The room was electric with 200 extremely accomplished women sharing diverse perspectives through rich dialogue without ego or arrogance. The talks were thought-provoking and we buzzed with new ideas and perspectives on our breaks.

A number of interesting themes emerged.  We are in the age of accountability whether we like it or not.  I used to joke that statistics are a crutch for people who lack anecdotal evidence, but the current trends are no joke.  They are here to stay and more scientific evidence will be required from here forward (and as a patient I can’t say I mind this).

However, the part about the anecdotal evidence is also not a joke.  To adequately tell the story of effectiveness and therapeutic burden we have to put the anecdotes back in the equation through quality of life indicators and patient reported outcomes collected in a valid and scientifically meaningful way.  Insurance billing codes will never tell the full patient story nor will physicians providing a secondhand account of the patient experience.

Something else very interesting seemed ever present and that is what I call “lost in translation.”  In many instances, various stakeholders seemed to say similar things like “patients come first” and “decisions to approve or contract technologies for reimbursement are not made on the basis of cost.”  So why then does it often feel so different?  I think we need to continue exploring these phenomena by breaking the walls down between stakeholders and furthering these discussions until we figure out how and where things become disconnected or twisted and how we truly walk our talk.  We have an incredible start coming out of the MedtechVision conference and now it is time to capitalize on our momentum.  Otherwise, much like Sisyphus, we will continue to roll the boulder up the hill without making the progress we know is possible.

To each participant I had the honor of speaking with and to our brilliant organizers, thank you for the inspiration and thank you for the work you do each day on behalf of patients!  Thanks also to the panelists and speakers who shared so much of themselves.  Their passion and insights helped fill my well and motivate me to do more.  It was truly an honor to be part of this event.

In closing, I leave you with one thought I hope spurs you on when things seem impossible.  “When the world says give up, hope whispers try one more time,” and this event has given me hope that through our collaboration we truly can change the world around us and continue on our paths to improve patient lives.