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 Stanfords 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, were like a computer virus, really. We will never stop until weve 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 dont think you have much of a choice in what your voice will be. If youve worn gloves to help prevent infection for your fathers 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 dont 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 ute, and to make a point. And for as much as I love other conferences, youre not going to find that at a TED talk. 

You dont need anyone to talk AT you -- youre an adult, and not a child. Youre a being with as much critical thinking, and life experience, as anyone else holding a different type of educational background, or expertise. Honestly, there wouldnt 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 Foxs now famous Thats my research, and thats 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 lection 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, thats 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 isnt just that... Its 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. Thats 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, thats the beauty of technology, right? I learned about some of them through peoples tweets, or through peoples blogs... or through videos. Couldnt have done that as efficiently in 2002. 

My mind was reshed and renewed with the beauty of other peoples minds, and ideas... and it will be, for years to come, thanks to livestream. (If you havent caught on, I have linked every "Day" subheading" to its 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 didnt 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. 

Itll 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. Its 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. ;-) 

Finding My Patient Voice My Adventures At Stanford Medicine X

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

Friday had come and gone with a massive amount of information, stories, and knew technologies featured in a relatively small amount of time. To be honest, Im still dissecting a lot of the information, and Im grateful for the live-streams, and videos, which I can always use as a reference.

Im also grateful for the dignity of finding ones bearings. Once we find those bearings, we regain a certain sense of confidence in ourselves, and situations, without which we may falter momentarily.  Finding my bearings came in the form of chit chatting throughout the day with others (encouraged by having to QR scan badges, and introduce ourselves), and by way of having dinner every evening with new friends. It was the validation I needed, really. A validation that comes from others who arent just similar to you, in their struggles, but who also laugh at your jokes, and are probably just as irreverent as you! I made some great friendships I wont soon forget. I felt human... an empowered adult, in her own right, without pretense, instead of an awkward child, sitting at the grown-up table.

Day 2:  Patient Dignity

Okay, so they didnt call it that. They just called it "Day 2." But "Day 2" was ALL about patient dignity, in my mind... or well, the indignities patients have had to suffer for the sake of getting much needed medical treatment for themselves, and their loved ones. 

Being a patient with chronic illness often leaves you feeling like cattle, simply going through a machine where you have no face, no back story... no humanity: just a being going through the system, the motions, the things put in place to achieve an outcome, a quota, or a financial goal, etc. And oftentimes, it matters not how well off you are, who you are, how famous you are... to be reduced to nothing. 

Meet some of the folks who fought back:

Michael Graves

Mr. Graves is an American architect, and Professor of Architecture at Princeton. You might not immediately know who he is, but hes more often known and identified for his creative designs for Target stores. I love Michael Graves. Heck, I have an alarm clock by him that I *adore.* Ive had that thing for 10 years. Its easy to program, very intuitive, and with two separate alarms, it has allowed me to keep ever changing, weird sleep schedules. Best of all, its beautiful to behold. 

But I digress... Michael Graves is an immensely talented human being. A designer, and an artist, in his own right. An optimist, and humorist. He was a person going about his life when chronic illness came striking at his door... In 2003, he became ill with a virus that spread to his spine, and left him paralyzed from the waist down. He recounts his initial symptoms, and his horrific experiences at the hospitals where he received emergency, and therapeutic services. It was his very traumatic, and dehumanizing experiences that gave him insight and a new passion to redesign the hospital room, and create bacterial resistant, patient-intuitive furniture... I could recount his story, but I dont think Id do it enough justice... so you owe yourself the 40 minutes or so to watch his video below, complete with pictures of some of these rooms, and the work hes doing.

Most notably, you can detect a hint of sadness in Graves account -- the sort of sadness of the self realization of not just his own vulnerability, of being at the mercy of someone else... and with little resources to make it through the day, but of others vulnerabilities, as well. At one point, Mr. Graves recounts how CBS was interviewing him when he was in one of the therapy rooms, and they asked him "Michael, what do you think of this room?" to which he replied "Its far too ugly for me to die here." 

Regina Holliday

I cant watch her story without crying. I just cant. Probably one of the most passionate speakers at Medicine X, Regina Holliday is just a beautiful soul. Regina is Artist in Residence for Stanford Medicine X, and she uses her paintings to express the reality of the health care system, the need for clarity, communication, and accessibility to data and patient records, as well as the injustices and indignities suffered by the patient... including her own grieving process, and her own indignities. Regina speaks creatively, and passionately about patients rights, and healthcare reform, and you can see she has invested much of herself in this fight through her national Walking Gallery project.

"You must look at the human face to determine what to do next ... "You must have patient participation in data and access, or you will never get the true story of care."

We must couple peoples data with their stories, and never forget, or give up.

Most telling is the story of Regina pleading with her husbands doctor for his data, wanting desperately to know what was wrong with him... but being belittled, and dehumanized for doing so. "I dont like people that research online ... Im the one with the medical degree." The picture she painted for that one event reflects a thousand emotions of one moment in time... a thousand emotions of desperation, trepidation, and ego. A thousand emotions we have probably felt, as patients, at one moment or another... but like scolded children, may feel a certain pang of shame to recount.

How do we change this reality? We write letters, we speak up, we stand up... we get engaged. We dont need partnership FOR, but WITH.

You must take us as we are... for we will never, ever keep quiet. We will blog it, twitter it, shout it from the rooftops... 

The Crux of Patient Centered Emerging Technologies

Interspersed with all these patient stories, Medicine X had also presented a diverse array of start ups, ideas, visions for the future, etc, for tackling confusing every day health tasks, or complex medical problems or processes. Whether it be shopping for your groceries (with USDA based guidelines, of course... something I will never use as a low carber), applications to help patients get in touch with clinicians at the wee hours of the morning, gadgets to help quantify ones quality of sleep (something I definitely want to use) or ones vitals during exercise, or applications to help simplify the potentially embarrassing scenarios of taking a urinary or fecal incontinence history... even online gaming communities to help scientists solve the puzzles of RNA sequence folding. Medicine X showcased it all.

They also discussed various obstacles to technology advancement, such as getting governments and current clinicians on board, the issues presented by HIPAA as well as personal privacy concerns, the realisticness of expectations on the patient (will many of us really want to self quantify to some of the levels seen, and how well will that go over with feelings of exhaustion, guilt, etc.), and of course... accountability. Getting patients to actually DO, and ACT upon the new information gained.

This last one is a big concern in patient advocacy, as well as in the medical industry... but it is where we can enter a sort of murky territory: how far do we help the patient, without patronizing them, or minimizing their disease? I was a bit annoyed to see that some of the innovators focused on obesity and diabetes (generalized for the audience, without explanation of types) as the example diseases for whatever initiative was presented. One of the presenters (on Day 3) went as far as calling type 2 diabetes the plague of humanity (never mind that he could of stood to lose about 40-50 lbs himself, and therefore heeded his own warnings.) 

I dont want to be a real negative bitch here... but theres really nothing more dehumanizing than someone calling your illness with which you have to live day in, and day out, as the plague of humanity. Whatever shall I do? Shall I wear a D scarlet letter on my sweater? Shall I hide in the closet? Shall I find ways to hide the fact that Polycystic Ovarian Syndrome keeps me very overweight, and that my weight yo-yos off and on, despite best efforts, and low carbing? I wonder... 

Among other pet peeves, one speaker simplified diabetes as something that they proved could be easily prevented -- even though the patients participating in his initiative already had pre-diabetes (and most likely a 40-50% beta cell loss), completely (of course, and probably out of ignorance) ignoring the whole questions of delaying versus preventing, and remission versus cure. All big topics I cant being to cover here... but suffice to say that despite lifestyle choices, many still go right on to developing diabetes, so lifestyle choices really only help us REDUCE risk of any illness; they have not, in our history as people, ever inoculated ANYONE against ANY illness... and then advocates like me have a very hard time bringing peace of mind, and healing, to people who were told they were in the clear. At the end of the day, we ALL need to have a healthier lifestyle -- not just diabetics. 

But, probably the worst offender, one innovator began his speech discussing type 1 diabetes... immediately jumping into scary statistics about diabetes (which vary greatly, depending on who you ask -- and were for type 2, not type 1) and intermixing those statistics with obesity statistics (which is really not 100% correlated to diabetes, otherwise all obese people would be diabetic, and is a disease in and of itself). To top off his confusing non sequiturs, he then went on to make jokes about why people in Great Britain were so overweight, and with diabetes, "so if youve ever had a British breakfast, youll understand," and ended his session of explaining why we need data, and more data... because we dont want to live in a world where obesity and diabetes are prevalent. Really? Honestly, its not that disease is something to be wanted... but the  benefit of having access to data is not really summed into a war against obesity and diabetes, it is summed into patient empowerment and action toward their conditions. THAT is what he should have said. Diabetes does not define me, but it is my REALITY, and as innovators, scientists, clinicians, persons engaged with patients... you had better damn well respect my reality... for when you dont do so, that is an indignity you heap upon me. 

You had better work on
your bedside manner NOW. :) 

And the funny thing of it is that I liked their initiatives! I really did! I liked their rationales, and their analogies... their applications. I *want* to support them... but they forgot my dignity. They forgot I am more than data. I am a FACE behind the data. 

So, at the end of Day 2 of Medicine X... I found my patient voice. And I thank them for that.

I found my voice, my bearings, and my dignity... and I got up, and I spoke out. Yes, on the microphone. Yes, I brought unwanted attention on myself. But, I thought "If I say nothing, now, I dont deserve to be a blogger... I dont deserve to claim I am angry about these things... I dont deserve to be an advocate... and I didnt start my blog to play nice." My apologies to those who paid to have me there.

The last few minutes of Day 2... I ended my day, with my knees shaking, my emotions on my sleeve, my heart rate through the roof, my courage being tested, and reminding the world, with a steady voice... that I am not a fat blob, having English breakfasts, who gave herself diabetes. I AM A HUMAN, AND I HAVE DIGNITY. I am NOT the plague of humanity.

I didnt expect people to get up and clap. I didnt expect all the attention, and comments, and support Ive gotten since. I only went there to learn, and listen... not to make myself "famous," somehow. (Or infamous, really...) But I just said what I had to say. Id probably do it again, too.

Is there some diabetes that is preventable? You know... I dont think anyone FULLY knows the answer to that. BUT SO WHAT? Does it mean I no longer deserve dignity if I do get it? If I "fail" to prevent it? Should I now be excommunicated from the population at large? Should I be made as an example to others? Should I be spoken of as a plague? As an unwanted thing in the world? 

Well, heres Michael Graves, and Regina Holliday... 

YOUR ARGUMENT IS INVALID. 

Finding The Right Health Insurance Policy

Doing the proper research is important when searching for a health insurance policy. It is a complicated market, but by considering as many of the important factors as possible you should be able to find the ideal coverage.

First you should consider the level of cover you require. Standard inclusions are usually the cost or any stays in hospital and any fees which may be incurred through visits to consultants. You should also be covered for any surgery required providing it is not for a pre existing condition. Beyond these standard inclusions many policies can be highly customised and there are many options available. 

To help you determine exactly what you would like covered by your policy it is a good idea to make a list of the things you would like to incorporate. If you need glasses or contact lenses it might be a good idea to include an optical care component. This could reimburse you for a set percentage of the cost of eye tests, frames or lenses. 

For women considering having children in the near future a maternity care component may be a worthwhile investment. Many insurers also offer a dentistry option which will refund some or all of the cost of any dental work you may require. If you can put together a list of things you really want it will be easier to reject any other potential additions to the policy when it is time to purchase. 

If you have a particular doctor or specialist you like to visit you should check if they are included in the insurers preferred treatment network. The more expensive policies will allow you to make use of a far wider range of doctors and facilities, but you will certainly pay for the privilege. You should enquire about the treatment network to ensure there are good facilities close to where you live. Should you require longer term care it will be far better to be closer to home than at the other side of the country. 

The last thing to consider is how much you can afford to pay. Once you have outlined your needs you need to find one which bests matches them as well as your budget. Many employers will offer a group health insurance plan which could save you money, so its worth checking to see if your place of work provides this. If you start getting quotes which are too expensive you may need to reconsider which elements are really essential and remove some of those which you do not need. 

There is an overwhelming amount of information available at times, so it is important to take your time and make sure you understand everything before committing to a policy. There are services available that will evaluate your needs and find you the best policy available, so if you are lacking time or are not confident about doing your own research it can be worthwhile looking into these services.  

Guidelines in Finding A Fitness Club

You would like to join a whack club but there are so rife choices! And then you will just end up having a headache! juncture clubs are effective motivators. They should motivate us and not frustrate us. Before you meet on a fitness club, make sure that rightful suits your needs again goals. And before you do that, you should first espy and regulate on what is your priority. By then, you will discriminate what you really need esteem a fitness club. Here are some guidelines you can consider in choosing a fitness platoon that is best for you:

1. where is unaffected located?

The location is the first concern that you should presume true when adjudication a fitness club. If the club is far from your home, you will just another excuse not to deal out. It is best to bonanza a competence that is near your home.

2. Are the employees kind again nice? Will they be able to help you reach your goals?

Make sure that the speaker has the chief experience to plan squirrel you. The lecturer should serve as a certified sharp that charge activity with you safely and effectively. Your orator should besides appreciate if you hold physical limitations or you may find an instructor that is well trained to work with you. You can also shake on the age of the instructor especially if it is one factor for your motivation and learning. The staff should also serve as helpful, friendly and know stuff. You can also ask the services they instance also find what is important for you. Some facilities have their own dietician and indubitable therapists that can offer services for you.

3. What cordial of programs does it present?

Find time to see what programs are there for you also permit if they proceedings your interests. get they offer group classes? Choose the facility that offers the classes you really appreciate. You can do a trial class to check corporal out if you want.

4. Are the facilities and equipments fit besides will they be available anytime that is most well-suited for you?

Check if the equipments are enough whereas all members. Otherwise, you will waste your time falling in line and waiting for your turn. Also make sure that the facility is open during the time you are most likely to finish trip outs and exercises.

5. Is the entire facility well maintained, clean and safe now you?

Machines and altered training facilities should be in clean also in useful order. If you see a lot of "out of order" signs, it could act as grave to think about. Modern equipments are safer and more well-heeled to use, so you may also long to affirm that. Are the floors cleaned regularly to avoid accidents? Is there enough room for everyone? Also check if the facility is located in a place away from danger, consider also if the location is all told lit.

6. Are the members of the club friendly and can they be your friends?

The fitness gathering is also a section seeing companionable interaction. manage occasion to drop by and meet the members of the cluster before you enroll. Other members can be your buddies in the near future and should be considered.

7. What is the schedule of classes and commit they be well-suited as you?

Find out what classes are offered at a specific time and conclude if you will equal available at the schedules given.

8. How much would it cost you?

It is capital to perceive the ledger membership fee again what intrinsic covers. Some opening clubs have undetected charges and you should be keen in checking that. Check if they have promotions or discounts again do they offer services at an extra fee. It is also important to cognize how long the aggregation has been and how often they increase rates.

9. How is rightful different from individual fitness clubs?

Don't just stick into one fitness party. Try to visit since many facilities as you duty again make a comparison. Then you power seemly diminutive abandoned your choices to the facilities that met your needs and priorities.

10. What end people say about it? transact your circumstance to amass feedback from other members. challenge them what they can say about the club and contract them convey image you about the experiences with the facility.

Choosing a fitness club is applicable dote on shopping on the optimum shirt for you. Do not be pressured and do not try to contact them right instanter. You power take your time to review and gather enough information if you are still not sure which one to choose. Once you posit made your choice, enjoy and get going the most out of existent.