Patients - The Invisible Stakeholders

patient sitting alone on hospital bed
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We are invisible.  We patients, the most important stakeholders in the world of health and medical care, the very people who should be front and center and top of mind at every moment of any task or idea involved in healthcare, are instead too often invisible.

I attended the Partners Connected Healthcare Conference in Boston. The speakers were absolutely fascinating and knowledgeable. The overall theme of the conference is to address ways of expanding the effectiveness and efficiency of a medical practice. Businesses have booths and tables set up to show attendees what their companies do. They are mostly focused on talking to professionals, not to patients, because it's mostly health and medical professionals who attend this conference.

Online communities was the topic of one session I attended. From patient groups like ACOR and PatientsLikeMe to groups for medical professionals like Sermo, online communities are tools for sharing information with others who have similar interests. They have become a highly effective way to learn more about diagnosis and treatment.  This session was a panel, meaning, there were four speakers who have a lot of knowledge on the topic, led by a moderator.

Midway through the session, the moderator turned to the hundreds of audience members and asked, "How many of you are providers?"  Then, "How many payers?"  Then "Industry?"

Then he turned back to the panel of speakers and moved on.

Hello?  What about the rest of us? Are we patients invisible?

Yes, I did pipe up. I raised my hand and called out "And how many of us are patients?" which caused a few moments of hub-bub -- and a comment from a panel member who said, "We are all patients."

Patients are Invisible in the Health Care Discussion

The real problem was not that one session at a conference. The real problem is that this happens everywhere. I rub elbows with medical professionals and industry leaders on a regular basis and they are always surprised that we are surprised that we patients are so marginalized. And of course, as you know, I don't believe that the professionals are patients, in the purest sense of the word. They know too much.

For some reason, in this country, medical care is provided to patients and for patients, but too rarely with patients.

Patients are Invisible in Policy Discussion

The most visible and potentially dangerous place we are seeing this is in Washington DC where healthcare policy is being decided. Those who will make decisions for us are making money decisions, and not people decisions. Further, patients are rarely even invited into the conversation.

I'll continue harping. I'll continue being the fly in that marginalizing ointment. We are patients and we deserve a voice -- in our own care, in our loved one's care, and in the bigger picture decisions about how healthcare is run.

Stand Up and be Visible

I hope you'll stand up and be counted, too.  In your doctor's office, to your payers, using tools that help you improve your care, in conversations about reform.

My goal -- our goal -- should be that one day, we won't be invisible at all.  In fact, we'll be the reason the healthcare system even exists. That just is not true today.

I have that dream.

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