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Patients 2.0 Conference: What We Learned About Taking Back Control

Published on October 16, 2017

“Patients 2.0 Conference

In early September, I wrote about the approaching Health 2.0 conference session called Patients 2.0: Taking Back Control and the Tools to Do It that Andrew and I would be moderating.  Our major goal for the session was to arm every attendee with tactics to better cope with and manage their unique health journey.  I now have the chance to reflect on the workshop we did in early October and want to share a bit about what we all learned.

We knew going in that the success of this workshop depended on two things beyond our preparation as moderators:  First, we needed a passionate and knowledgeable cross-section of discussion "Jumpstarters" to get ideas flowing.  We were very fortunate to have engaged patients, survivors, clinicians and technology experts—all incredibly dedicated to sharing their experiences and expertise.  Second, we needed attendees who could directly contribute to and benefit from the discussion and the concrete tips and tactics that we hoped would surface during the session.  Equally wonderful: we were blessed with a very full room of highly engaged participants across many diseases and roles—some patients, some survivors, some care partners, medical specialists, social workers and healthcare technology geeks!  We could not have asked for a more perfect scenario.  

Here are some of the key takeaways that surfaced during our three-hour discussion:

As a patient (or care partner) you have to know what you can and cannot control in your medical situation—and then focus on the things you can.  While you cannot control your diagnosis, you CAN do your homework on what exactly you are dealing with: What the latest treatment options are; where the top specialists in the world are who can either treat or consult with you and your healthcare team; and get very clear on what your options are and what you are comfortable with in terms of location, quality and cost of care.  If you are armed with all this information, you can have a very productive conversation with your healthcare team and be part of the decision process along the way.  Taking back control.

It is very important to "triangulate" information you gather about your diagnosis and treatment options before making decisions.  Patients get hit with medical information from their medical team and perhaps a second opinion (or third), from research online, from talking to other patients, and from well-meaning family and friends.  It is important to identify the most trusted, reliable sources of information and weigh all other opinions against those.  This can be a very confusing process, but in the end, it is YOUR LIFE and there is no more important set of informed decisions you need to make. Taking back control.

You need to accept that serious/chronic illness brings with it psychological stress and tests your emotional healththis needs to be treated and supported as much as your physical malady.  The assembled group agreed that the "whole person" needs to be treated and supported when a serious disease is in the picture.  There is no shame in acknowledging the collateral psychological impacts of disease, and treating them as diligently and consistently as the underlying illness is critical.  This is where integrative medicine, social workers, psychologists, counselors and peer-to-peer support groups are options to consider as part of an overall treatment plan. Again, taking back control.

“”

As our dear friend and mentor, ePatient Dave, mentioned a few weeks ago in his blogthe current healthcare system (at least in the U.S.) suffers from "financial toxicity"out of control costs that directly affect seriously ill patients.  Industry structural issues appear to be at the root of this (read this as "There's no simple answer"),  and while we as patients and care partners can feel like victims, as powerful patients we can start the long process of creating change, by doing what we can to protect ourselves.  Dave—and the folks in this Patients 2.0 session—agree that the answer is awareness and assertiveness: do what you can to know what the best possible care options are, engage in dialogue with your medical team and healthcare administration about what YOU need to get well, and help educate others about how to advocate for better financial outcomes. There is some amount of control there too. 

One other revelation I want to share with you came out of wandering the exhibit hall at Health 2.0 and talking to many of the creative and well-meaning technical folks focused on developing online tools designed to support the patient journey:  Many great ideas, no integration.  There is a myriad of stand-alone applications that do everything from "personalizing" a patient's electronic medical records, to managing multiple medications and dosing regimens, to social networking to help patients find others locally, to clinical trial matching, and on and on.  All great tools with good intent…but standing alone they create even more confusion as patients and care partners struggle to move from diagnosis, to treatment, to recovery, to survivorship in some manageable way.  One big thing I am championing at Patient Power is to see if we can figure out how to integrate some of these truly useful items into a "toolkit" that we can use as the journey unfolds—and make each step easier.  I guess in this way, I feel as though we can help our members take more control of the unique journey each of us is on.  

Your comments are welcome!  Reach me at: [email protected]  

Remember, knowledge can be the best medicine of all!

Esther Schorr,
Co-Founder, Patient Power

“Esther,

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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