What Patients Want From Their Clinicians...

I think a lot about patients' rights, and expectations; about what the most ideal medical care should look like for a person with diabetes. I've often thought of putting together a post regarding these thoughts, but I never quite had a catalyst to really help me organize together all the elements.

The time I spent at Medicine X really got me thinking more in that direction, and contextualizing my vision. Some of these might seem like basic tenets, but others are quite 'revolutionary.'

When I advocate, I feel I usually do so, subconsciously, from some of these starting points... and I suppose they could apply to just about any other health condition. These are what patients want from their clinicians:

To Be Afforded Humanity... With:

• Respect and Freedom: As a partner in a journey of self discovery. An equal who is allowed the freedom to disagree, respectfully, and to make a different (informed) choice from what the provider would have chosen. Not as a 'civilian' kept under the inflexible 'regime' of the provider, nor as a subordinate, ignorant layperson, or petulant child.
• Dignity and empathy: As potential mothers, fathers, daughters, sons, sisters, brothers, significant others; people with potential hopes and dreams, fears and anxieties, just like them. Not as cold hardware to be tested, and prodded.
• Encouragement: As persons in need of perspective, and hope, from those who have the positive power to guide us into better health. Not recrimination, or scolding, whenever we 'fail' at meeting a goal. 
• Acknowledgement: As partners deserving of their full attention, concern, praise or recognition. Not ignored when we present our health concerns, or when we reach an important milestone in care, or when we work hard to achieve goals. It is, sometimes, incredibly hard to jump through some of the hoops and obstacle courses which you demand of us... so please, give praise and positive feedback when we achieve them! 

To Be Afforded Effective Communication... With:  

• Patient Education: As partners fully capable of learning, understanding, and being challenged and tested, we deserve to be taught about our health conditions, and how to manage them, either by our clinicians, or by referral to those who can properly educate us and guide us into better health choices. There will be levels of education which each patient can handle, but we can all handle something. Not being told 'you have x condition,' and sent on our own, with nothing else to cope or fight back.
• Access to our data: As patients, and persons responsible for intimately managing a health condition, we should be allowed to know where we stand, with truth and honesty. Not to be left in the dark about one's condition, and progress... with only the provider being privy to the facts. 
• Proper Feedback: As patients needing guidance, at times when we may not feel safe making our own decisions, by returning our calls, e-mails, or messages, promptly. Not by relegating our most important concerns to other, less informed health assistants or personnel, nor by ignoring our efforts to contact you. If you openly make yourself available to patients, please honor that commitment.
• The whole story: As partners and patients who need ALL the information (and proper diagnostic testing) when it comes to choices for treatments, medications, and tools. Not being limited to a clinician's predilections, or the predilections of the company that might be paying them to promote certain tests, procedures, drugs, or tools. [We will gladly listen to your predilections (and sometimes choose them), because after all -- you are the medical professionals -- but you must understand that we are the experts at living with our condition, and need ALL the variables to be able to make informed decisions that might impact the fate of our future health, and our families.] 

To Be Afforded Quality Care... With: 

• Continuous Education:  As patients receiving exclusive care from a clinician or provider, we expect that they keep on top of new emerging technologies, new research, new data, and new approaches to managing illness. Not to take the minimal continuous education courses, and keep practicing on potentially outdated methods from when they first graduated medical school, which could fail to improve a health condition, or even make it worse.
• Embracing the researching patient: As partners, we expect to be embraced with respect when bringing in new data that can be studied, together, as a team. Not being chided for doing 'online research.' Medical research is growing by leaps and bounds, so it would be impossible for a provider to keep on top of all the information on their own... so why not partner up? We could solve a puzzle together, rather than 'against' each other. This is not about who has the diploma; it's about who ultimately gets to live with the decisions.
• Referrals to Specialists: As humans who know and understand that not everyone has all the answers and information to everything, and that sometimes it's best to embrace those who may provide additional insight or more specialized care. Not negating, out of ego or greed, the chance to expand one's medical team and "think tank," in order to find positive answers to puzzling health problems. 
• Committed Advocacy: As advocates for one another, by being our strong voice to health insurance companies, government, and especially the media, or those who might be ignorant to our condition, and thus seek to curtail our needs, and cut down our most essential and basic of services, remaining true to the Hippocratic Oath. Not by remaining silent to our needs, or cowering to the all-mighty dollar, because a businessman, with no medical knowledge, coerced you. 

For as many things as can be said about the healthcare field, and as much as times may change, I don't feel many are more important than these basic pillars, rights, and expectations. These are very essential, basic principles that we can all embrace and pursue in our futures. Often, we as patients can be difficult as well... and there should be some mutual expectations of cooperation, trust, and respect as "partners" and not subjugates. As the "Healthcare Street" is usually kept as a "One Way" road, I throw these out there as a sort of Patient's Manifesto of Rights and Expectations. 

Finding My True Hope: My Adventures at Stanford Medicine X

This is the fourth of a series of blog posts in which I will recount my adventures at Stanford's Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-) 

Patients learn to develop a strong voice. We have to... There are a lot of other voices, and interests, competing to be heard, and some, outright wanting to talk right over us. So, often times, a patient rises up above... and becomes an advocate: one who learns, and becomes an expert in their condition, as well as teaches others to self empower themselves, and keep going. As a part of that, it follows that the advocate will also seek to change their environment, change minds, and change the system as a whole. In that way, we're like a computer virus, really. We will never stop until we've re-written it all.  

Despite this same mission, advocacy comes with different voices, and we all get to choose that voice. I suppose... 

Though, when you have lost someone you love to chronic illness, I don't think you have much of a choice in what your voice will be. If you've worn gloves to help prevent infection for your father's in-home dialysis treatments... then, well... you no longer wear gloves much, if at all, when it comes to advocating for his needs, or the needs of someone else to follow in his journey. 

This might make us seem a little emotional, a little "Type A personality," a little pushy, a little obsessed, and perhaps... a little ANGRY. 

So, I don't want my dear readers to assume the worst from my Day 2, at Medicine X, either about myself, or about the conference. The reality is that my exchange on Day 2 is what makes Medicine X so unique, and wonderful, and freeing. Why, you ask? Why is someone talking down at me such a freeing thing? 

Well, the answer should be self evident: because I was allowed to talk back. Yes, I, THE patient... was allowed to have a conversation, to contest or refute, and to make a point. And for as much as I love other conferences, you're not going to find that at a TED talk. 

You don't need anyone to talk AT you -- you're an adult, and not a child. You're a being with as much critical thinking, and life experience, as anyone else holding a different type of educational background, or expertise. Honestly, there wouldn't even be any medicine without you... for YOU are the patient. And throughout MedX there were all sorts of folks expressing their various concerns, and input -- from Susannah Fox's now famous 'That's my research, and that's not how I chose to interpret my data,' to your regular advocate questioning potential 'overquantification' and privacy issues, to well, my now famous 'comment.' 

Medicine X is not a place for people to be 'perfect' -- everyone will have their biases, or their ignorance, or their differences of opinion or data interpretation. This is in no way a 'bad' reflection of the people who organize Medicine X, or of any of the participants, speakers, or guests, really. Nor is it a bad thing, at all. Medicine X is a place to have a CONVERSATION... and conversations bring outcomes, and education. Which brings me to... 

Day 3: The Doctors of Tomorrow... Today 

"Physicians are no longer the sole gatekeepers of validated health information ... The role of providers is evolving almost as quickly as technology. Value is no longer just knowing the right answers, but asking the right questions. And specifically, asking the right questions at the right time, the right place, to get the desired outcomes ... We are witnessing the evolution of value from content to context." -- Bassam Kadry, MD, Kadry Foundation, Stanford University, on the process and the whys of looking for new startups, and emerging technologies.

One of the most precious things I took away from Medicine X is that there are also other types of advocates: clinician advocates. The people who provide you with medical care, also tired of the state of affairs of their industry, and wanting to change their OWN landscape. Clinicians who understand that they are often, patients themselves. Or moms. Or voices for change, seeking to change the minds and views of their fellow peers, and embrace the new face of medical care. Doctors who understand that they no longer hold a monopoly on medical data.

Yes, that's right. 

Just like you and I... people who want to see change happen in how medical data is dealt with, how people are handled, how we all benefit from the system, and how well we all LEARN and make decisions together -- there are many, many, invested clinicians out there, who want to work hard to change the system. (And many of them work in boards, and foundations, who make conferences such as Medicine X happen.)

In the beginning, I thought "well, Medicine X is a conference about technology, and the bettering of medicine and patient outreach through technology..." but I was wrong. You see, it isn't just that... It's a lot more than that. Medicine X is a REAL coming together of PEOPLE: patients, clinicians, researchers, academicians, innovators, programmers and silicon valley entrepreneurs, investors, etc. People with various 'hats,' who make a giant think tank (and without all the noise in the middle from all the bureaucratic machines), and embracing their most creative self, seek to DO something about the problems... WITH technology. That's all it is. Thinking outside the box, with the new tools we have... and some cool music, and lights. :-) 

And it was so much fun! 

There were many sessions, some very hands on, and some going on at the same time in separate rooms, and I kind of wish I could have cloned myself to go to all of them. But hey, that's the beauty of technology, right? I learned about some of them through people's tweets, or through people's blogs... or through videos. Couldn't have done that as efficiently in 2002. 

My mind was refreshed and renewed with the beauty of other people's minds, and ideas... and it will be, for years to come, thanks to livestream. (If you haven't caught on, I have linked every "Day" subheading" to it's corresponding livestream link.) 

I love an analogy put forth by Esther Dyson (who spoke to me, and about my little comment, at Med X --  and it was quite an honor, really...) in which she discusses the breaking up of AT&T by the government. In essence, when AT&T was broken up, it really didn't fix the problem -- it only created a handful of other telephone companies, with (arguably) similar power. Instead, what really brought these companies to their knees was, what? NEW TECHNOLOGY. The wireless phone. Or otherwise, changing the rules. You take away their monopoly of data, and you get to redo the system. 

It'll be much the same with the medical industry. When we get together, and embrace the tools before us -- and how we tackle medical care and patient approaches -- we will get to rebuild that WHOLE puzzle, the way we wanted to from the beginning. The future is now, really. It's inevitable. 

... And in case you want to know, the speaker who I addressed with my little 'comment' was very receptive, and very polite. I am sure he will choose his methods more wisely, next time. (No, he was not an evil troll. Please forgive him. I have.) 

So... if I had to sum up my time at Med X, I could tell you that: 

• I was a lost villager... 
• Who found herself accepted for her self quantification... 
• And hence, found her patient voice and courage, 
• Leading to a true HOPE in her advocacy efforts.

I will try to share more, as I have time, on all the various technologies I learned. Maybe even arm wrestle someone into a guest blog post, or something. :-) But I want to personally thank everyone... for taking the time to read through my various blog posts, and ramblings. My 'life at Med X observations,' if you would.  

I may be the angry woman who writes about diabetes, but you folks make me the advocate that I am. I am indebted to all of you, and the wonderful people who gave me the opportunity of a lifetime to be a part of something big, at an institution such as Stanford University.

I will not... not ever... not soon. Never forget. ;-)