Mobile Health 2011: What Really Works: A “Patient” POV

This blog post has been accepted by the Journal for Participatory Medicine: Please review and comment there. Mobile Health 2011: What Really Works: A “Patient” POV

I'm Back....sort of

I have really fallen of the patient advocate sharing wagon. Sometimes, dealing with life is such a handful that it takes all your energy to focus on tasks at hand rather being able to bring the experiences to a larger community context. Oh well, I do bite off more than I can chew sometimes. So, I am going to make an effort to simplify and do smaller writing/sharing exercises. Have no idea if it is possible or I an do it, but certainly will give it a college try. Got to start dealing with docts again and make decisions about what and how regarding potential new surgeries. All I can say is #wtf. It is tough when doctors simply look at you and shake their head saying how "unprecedented" my case is. That was the last two weeks and so I just closed my hatch to recharge and regoup. Ok...so now, I am sort of back.

Unexpected take aways from the E Patient Movement

This post was started on February 19th and has been updated and reposted on March 6

Over the year and especially in the last several months through my meanderings and activity on Twitter I have crossed paths and have been honored to meet and converse with several people engaged in the "Epatient" movement a.k.a. Patient 2.0, which is really about how patients and patient advocates are partnering with their doctors to design/modify courses of treatments. They often using medical social networking sites such as Patients Like Me, ACCOR, PUBMed among many many other tools to find alternative treatments that improve the quality of their life, the patient's life, if not save it (as in the case of Dave). This was recently written about in an article in Time Magazine. These activities set in the larger context of the health 2.0 movement, using technology in a variety of forms to help make healthcare better, safe, more accessible, and transparent.

It takes a lot of guts and a special doctor to engage in this progressive new form of patient/doctor relationship. For instance @ePatientDave (Dave deBronkart) attributes his survival of late stage kidney cancer to this method. Dave has become a staunch advocate of patient particiapation and access to their healthdata. You should read his blog. He is funny and adamant about making healthcare more accessible. To Quote a recent comment he made on a post about Roger Ebert. " My task, is to go around speaking at conferences .... to wake people up about the fact that bad news is likely to smack their family in the face someday, and when it does, they'll want healthcare to work really reliably".

The movement includes those like @ePatientDave  and @ReginaHolliday advocating better access to their (your) personal healthcare record (which can often be costly and impossible to get.  Regina's story is poignantly sad. Her husband's death was due to lack of adequate access to her husband's healthcare record because of the patriarchal medical system (including doctors and insurance companies).

Alan Aviars, @Aviars is a computer programmer, who is relatively disgusted with the general inoperability of EHRs and the bureaucratic encumbrances it entails to work with/on them. He is a supporter of Open Source Technology. He has his own story about the struggles of retrieving his father's medical records, luckily things went better for his family.

There are patients who actively reach out to their doctors to create a proactive involved team to address their heatlth concern. I like Christine Kraft's, humor filled yet pointed letter to her doctors about the partnership she needed to have with them to address her care. You can follow her at: @ChristineKraft. Or read her rich blog that parcels out ruminations of all things philisophical.

There are researchers who write about these topics that, I think, really bring it home, like Susannah Fox a.k.a. @Susannahfox, of the Pew Internet Research Center, who wrote a piece at the end of January called What's the point of Health 2.0 , essentially stating that technology is not the only answer, but it can be one of the tools in the toolkit to help patients acheive better outcomes. The trick is to find one or some that work for those that are less than hyper engaged patients. Remember, Felix the Cat, with his bag of tricks.

There are energetic startup folks, like Jen McCabe, @Jensmcabe, who is trying to create better health with micro-movements throughout the day in a game/challenge format, called Get Up and Move. It is a lot of fun, try it. You can do it via Twitter and  Facebook.

And, of course there is Brian Ahier, @ahier, who passionately brings insight and context to the Government meets Healthcare technology debate through his blog http://ahier.blogspot.com/ and Tweets. These issues are especially relevant because the government is spending money via the HITECH Act (Health Information Technology for Economic and Clinical Health Act) under the AARA (American Recovery and Reinvestment Act)  to support the development of EHRs (Electronic Health Care Records) that meet a set of criteria, including "meaningful use". All very complicated. If you want to learn more about this, definitely follow Brian's posts.

Finally, yesterday (now a couple weeks ago), I read a post about a woman who would not take no for an answer.  The post was called:  "Some People Don't take death for an answer" by @ePatientDave on the e-patients.network about Laurie Todd, who basically had to bootstrap her survival of a late stage appendix cancer. Her HMO who said there was no treatment for her condition. She found a source of treatment, had to fight her insurance company to pay for the treatment, and eventually won and underwent treatment and has been recovery so far since 2005.

Her story is what inspired me to write this post. Frankly, right after reading her story, I got deeply depressed. I was so impressed by her accomplishments that it brought out in me my failure to have my experimental procedures overturned.  I looked at her website and looked at the points she made about how to win an appeal. I laid awake at night going over what I missed in my recent failed insurance appeal. One for nearly 30K, I wrote three appeals for a total of 2 reams of paper (including all the supporting literature for my procedure, the procedure is the only know treatment for the condition, and it is  supported by other major insurance companies -- I had the top Aetna insurance....they paid for all other 13 surgeries, I digress). I thought I tackled the definition of experimental treatment according to her method. And, all I could do is think why was she able to make a difference and why am I not.

Then finally, I got to thinking that some of this pity party has to do with battle fatigue. Because, frankly, I am. And, that is why under these times, I try, after I have beaten myself up good, to lift my head up, to look across the horizon to see what others are doing out there. Then, I sit back and give acknowledgement to those who, through their stories, have enriched my life, given me hope, gotten me really excited about healthcare and making a difference. They have embraced a stranger, shared stories, cheered me up, made me laugh so hard, and whom I can and have learned from.  That is when I remind my ego filled self that their successes don't take anything away from me. It is not a reflection on me.

These patients and people make me realize that I am not alone, and that we are all apart and contribute to the matrix of life, inspiration, and in this case better healthcare for all. There is so much to live and fight for.  It is not a time for me to crawl into a corner.  My condition (including the bureaucratic mess) makes things difficult, but I am not going to die, unless something goes wrong in surgery, or whatever. If people who face life ending conditions can fight not only their condition but the bureaucratic machine,and  win, survive, and create transformative experiences from their battles, I should be able to muster the courage and keep on truckin, knocking down what walls I can.

I am humbly reminded that we are all connected, and in the bigger picture we suffer if we denigrate our individual  failures and successes. We need each other to keep sharing, fighting, pushing back, laughing, building a disparate and diverse community of people who deeply care about making a difference for themselves and ultimately for the better good of man.

I can now sit back and say. "It is a good day to die"-- remember that movie line?

The Cluster F*ck of the Healthcare Summit..Why the President, GOP, and Democrats need a mediator.

Today I watched the healthcare reform summit. I have never watched the political process played out. Overall, I thought it was interesting, but was amazingly dismayed to the extent that they... the Republicans, Democrats, and the President are fundamentally so philosophically far apart. The Repulicans want to start from scratch and the Democrats want to push this thing through.

I have so many reactions. And, as a novice to all this am not sure where to begin. So I will post these basic points.

Sen. Jon Kyl, a Republican from Arizona, said it quite well:

"We do not agree on the fundamental decision about who should be in charge," he said. "We all agree on eliminating waste, fraud and abuse. Of course we do. But it's how you go about it."

While the president was mediating the process there was really nothing fundamentally agreed upon except... some concession to limits of malpractice (major Republican point) and allowing states to experiment with alternative means to resolve lawsuits. And, of course...yes, we need reform.

My problem with Obama and the Dems combined is that they want reform no matter what.
Obama dings everyone on special interests and non bipartisanship and campaign shit, yet he get's bristly when there are criticism about his plan. While the Republicans are so entrenched in the notion that it is unAmerican to have everyone purchase health insurance, which I find a ridiculous position. We all have to buy car insurance, don't we. I believe it is illegal if you don't have it. So, why not health insurance? Especially when medical costs are 17% of the GDP.

There was a lot of discussion of purchasing pools and the best way to manage such agreements.  I absolutely agree with leveraging purchasing power.  That is a standard business cost saving tool, be it a pool for independent small business owners among other techniques to keep the costs of buying insurance down. No brainer there


And, so it goes. It is quite a debacle. Where do we go from here? I don't think much more than continued entrenchment in positions that are getting further hermetically sealed. Too bad that both sides are so stuck on their position statements.

Although I believe that healthcare reform is overdue, I do think that care must be taken to ensure it is done reasonably well. While I applaud the Obama administration for tackling this head on, I don't think passing a bill without support of the Republicans is a smart way to go. It could cause more alienation.

Based on the following Twitter feeds #hcr and #hcsummit I am amazed how negative many of the responses are. Yikes. Do I live in this country.

I wish I had more poignant points to make, but as a newbie, this is the best I do. The WSJ had a good article . And, if that is not enough You can watch here for highlights.

The Ten Point Plan of the Year:

As I started out this New Year and since I have been out of the work force for so long I am in the process of determining what to do next. For me to do that I need a plan. My challenge is how distracted I get. I have far too many interests but I seriously have to take into consideration the forces of practicality.

I want to create a conceptual map of where I want to spend my attention and make and effort to focus on those essential areas.

What I have discovered so far about my goals:

1. Define a set of particular areas and stay focused w/in those areas. Do activities to support those activities
   
2. Healthcare
1. IT (patient support tools, EHR, social networking)
2. Management (need a degree)
3.  Ekosys:
1. Build Site
2. Design pots, terrariums, other uniqe arrangements, landscaping
4. Define what you don't want:
1. I don't want to return to the publishing world.
5. Want to learn CPR and get CERT training
6. Get active in local community activity
• New Monterey neighborhood association
7. Get a job
• Network, blog, Twitter:  2 to 5 contacts a day
• Blog more regularly on work related activities
8. Get more personal balance in my 
• Meditate
• Track physical activity and ups and down everyday
9. Get Stronger in bad joints
• Add  1 to 2 more classes per week
• Start hiking
10. Plans for next home projects

Looking backwards and Forwards at the Same Time.

Every New Years Eve I try to sit, look back over the year, and write. Sometimes it gets committed to paper but often it remains as disintegrating memories in my head. Today, on the cusp of a new decade I thought it really important to take a moment and look back and forward simultaneous. Is this what being in the moment is all about?

First I start with a brief synopsis (if that is remotely possible). Ten years ago today I was in Monterey with my partner Guido. We had just finished laying 2 tons of stone pavers in preparation for a New Years eve party. My friends Julia and Morgan were up from LA. Ironically and very accidentally I am now down in LA at my friends Julia and Morgan's house preparing for a New Years eve party. They now have two of the most adorable kids and I am so happy that I get to be part of their lives.

Heading into the year 2000 I was staring down the barrel of unveiling the extent of my rare bone disease and unfurling the methods available to me to address the collapse of my joints. In 2000, I had the first of many experimental surgeries and hard roads to recovery. The first was a vascularized fibular graft. They took my fibula out of my leg and stuffed it into my hip. That was trick. I returned to a company that had undergone a near transformation (meaning I knew few people who worked there). Then in 2001, I found out I had the bone disease in my knees on a trip to Yosemite, started a new career in intellectual property rights. I got laid off and rehired into a new publishing organization-- Thomson Learning. I met Dr Steadman and Dr Philippon in Vail Colorado. That was the beginning of quite a journey. I traveled back and forth to Vail Colorado more times than I can even count to repair and halt the destruction of my joints and bones. I managed a career that blossomed into something wonderful. So many terrific talented people...Carline Haga, Netty Hoglaund, Andrew Clowes, Larry Molmud, and all the other creative smart people at Thomson Learning. In the midst of things my relationship with the man that I thought was the man I would spend the rest of my life with imploded and a new relationship developed. Since then, I own my house, have a loving relationship with Larry and his 3 kids -- we got married last October, I left my job in 2007 to take care of my body.....because it wouldn't let me do it otherwise, and at the end of a series of difficult surgeries -- 14 to be exact -- on hips, knees, shoulder, elbow I am hoping that staring into 2010 that I will reinvent myself and see myself looking forward to a new career in Healthcare using what I learned in 10 years at Thomson Learning and what I have become passionate about -- healthcare and the use of technology to better enable the healthcare transaction between doctors and patients.

So, the month of January is going to be about laying the groundwork and goals to start getting my body stronger, since I am finally seeing hope. And use this blog as a tool to help form my thoughts around the direction I plan on shifting my career in. (I actually can say those words for the first time in a long time). When you are so focused on pain management and recovering from invasive surgeries there is very little else that you can focus on. I am really excited that for the first time in 10years I am not facing imminent surgery. I see hope and possibility. Granted that might change anytime. But, I will take what I can get.

MoveOn.org Political Action: Stop the gift to Big Insurance

MoveOn.org Political Action: Stop the gift to Big Insurance

I have been a bit hunkered down, but am resurfacing to take on the "good" fight....and add my support to making a difference. And, one of those steps is healthcare reform. I never felt moved to be politically active. But, after my experiences in the current healthcare environment, I have been moved. And, the system needs to change. So, if have called my Congressman and Senators to add my support to retaining the public option. We need to create a competitive environment. Currently insurance is run by a few major organizations and they are primarily in it for the profit. So, we need to change that. Right now, the public option looks as good as any....

Tips for Understanding your Medical Insurance

Dealing with and understanding any medical insurance requires some talent, patience, and mostly perseverance. What happens when you have to change policies? That can be a stressful experience. 

Recently, I had to change from my fabulous traditional indemnity policy (straight 80/20 split) with no distinction between in- and out-of-network benefits) to what is considered by modern day standards pretty darn good insurance a PPO - Plus (boo hoo). The "Plus" only means you have additional out of network benefits.

After I whined and moaned for a while about my fate, I decided to bootstrap it and understand the new animal I was dealing with. And, boy, can it be complicated. Pay special attention to the language; it can be very obfuscating.

Here are some basic questions for the insurance company

1. How do copays work? Do they apply to deductible? Most don't.  That is simply what you pay out of pocket. Your deductible is the "co-insurance" part of the deal

2. What is the definition of in-network and out-of-network benefits? It is important to understand what they mean by whatever breakdown figure they use (for this example I am going to use a  70/30 split).

   What you will ultimately pay is not necesssarily based on what the doctor bills you. It is dependent on what the insurance company deems as "allowable". (And, all use different fee schedules there are no federal or state guidelines, although all insurance companies go off certain standard metrics).

   So, let's say you get a bill for $150 for an out-of-network doctor. Your insurance company may say that $100 is allowable by their schedule. They base their reimbursement on the allowable fee of $100. So, that means they pay $70 and you pay $30. The other shoe that will drop for you is the $50 that insurance did not allow. The docts office will "balance bill" you that amount + your coinsurance. So, your total out-of-pocket costs will be $80. (Sometimes, you can get a doctor to write off that $50, but you have to be proactive and ask.). This is not the same as a co-pay.
   

The other part of the equation is to understand how you provider works with the insurance company. Usually, doctors offices know who they contract with and who they don't. Remember it is your job to ask, so you know what your cost could be. 

There are many flavors of the same insurance company. Just saying Anthem won't get you very far. For instance, Anthem in California is only run by Blue Cross (not both Blue Shield and Blue Cross). You need the specific insurance info, which is determined by ID and Group numbers on your ID card. Those numbers do more than simply identify you and will let you know what the score will be. Think of it as your medical credit card with your personal rate information.

1. If you are not sure how your new insurance will treat a provider (this is usually only significant in the out-of-network scenario(s)) You can always ask for the diagnosis code(s) (ICD9) and procedure code(s) (CPT) the docts office will use for your treatment/visit.

   Then go back to the insurance company and ask to run a test claim. That should give you a good guideline on how insurance will pay. When you do this, make sure to ask if the call has been recorded, and always take good notes that summarize the discussion and outcomes (include name of person, date, and summary). Insurance companies always say that no claim quote is valid until it is completely processed. Good data is key. In the event that something goes wrong, you can point to the conversation you had. It is always more difficult to recreate your memory.

2. If you go to a hospital in your area, make sure you find out if both the facility fees and doctors fees are covered. Ask this of the billing department. The receptionist checking you in is often not a reliable source of information. I have come across cases where the facility is covered but not the doctor (i.e. radiologist, pathologist, emergency). It is a serious drag to not know this in advance. You think you are all covered, but then you get a $450 or more doctor's bill.  

   The hospital is generally not proactive in telling you this (unless you get someone who is on the ball, which in my experience is not very often.) Tell me, how many times have you asked the same question from multiple representatives of a facility or insurance company and gotten as many answers? Please note: Most say, that they do a courtesy billing. That does not mean that they are preferred providers of your insurance company. 

These are some simple techniques to help you better manage your costs. Until our medical system changes and patients have better consumer control over their costs, these simple techniques have been the only way I have some measure of understanding and controlling costs.

I highly recommend doing these basic steps before you need to use services. An emergency can happen at any time, as I have found out the hard way. Once you get a handle on what the expenses are (especially your out-of-pocket ones) before you have any treatments, procedures, etc... you will be much better in control of your outcomes.

Never assume, always ask questions, because it is in your best interest to manage the nuances of your healthcare and be a better CEO of your healthcare and body.

The second guessing yourself game and the Havoc it creates

Finally, I am going to get a lightweight wheelchair. I cannot believe that I am so excited. But I am. Mostly because of the satisfaction that comes along with it.

I started battling for use of a wheelchair during my recovery over 3 weeks ago. That was when I was told, at the hospital by the discharge planner, that was a durable medical good that was not covered by insurance, along with the shower chair, raised toilet seat, and wheelchair cushion. This was after I spent a great deal of effort to determine what my policy covers. I even, in the hospital, spent hours highlighting the insurance document to show the discharge planners what was covered. Something that they never looked at. Something they pushed me back on. And, a discussion I crumbled on, and nearly gave up the fight, mostly, I just didn't push for what I really needed (a light weight wheelchair). I accepted the 2nd best option – any old wheelchair. And, that was not very good for any of us. So, since we got it I re-geared myself up to getting a light weight one. And, I have. And, it is covered.

So, what is the takeaway. Don't second guess yourself. Don't doubt yourself, especially when you know what your rights are (as I knew by my insurance company's medical policy bulletin covering durable medical goods). It is easier to doubt yourself when you are not feeling well, especially in the face of pressure and a system that seems to run on denial. I know I buckled. 

The good thing is that I regrouped, but it took 3 weeks longer to get what I should have gotten. Had I stood my ground I wouldn't have wasted the additional time (at least 8 hours in total) – day's wage – to get the right goods. So, next time I will stand my ground. 

I wonder if other people do this?  Maybe I am the only one, but I doubt that. HA!

Share if you have similar stories.

When you don't look the part

During my last several hospital stays I have taken to wearing a camisole (helps hold up the chest) and loose yoga capris after the initial surgery etc .... instead of a hospital gown. And, boy has that caused a stir to the point of eliciting comments from caregivers.  "Wow, you look like you are ready to leave." (on day 2 post surgery, while I am shuffling around with my walker). Or, you don't like you have anything wrong with you (What about all the IVs that are sticking out of me?). 

I don't think people say these things to be provocative. I guess I get provoked.  Sometimes I take it as minimizing my suffering or what I am going through. And, I do the same thing. I try to look like and act like there is nothing wrong with me so that I can pretend that there is nothing wrong. 

It does raise the question/issue of how linked people's perception are to being sick, including my own. You have to look sick to be sick. It's weird. It is almost as if, the legitimacy of struggle/illness gets reduced when one does not look the part. That happens to me on a regular basis. When people see me in person, check out picts, especially when I do not have an aid in hand (crutches, wheelchair, walker, cane) then I must obviously be OK.  "Oh, you must be doing better." When in fact, I often don't use a cane, because it hurts other joints, or I am too lazy, or whatever reason. I am in constant pain in so many places. But, because I am athletic looking, thin, long legged, I must be ok. When I went to the hip replacement class, prior to my surgery, two separate nurses checked to make sure I was in the right class. I insisted that I was. It depressed me, or should I say enraged me. It even makes me second guess myself. ..." Maybe I really am OK, and have no problems, or have lesser problems than I pretend I do ". When I allow those sentiments to grasp hold of me it can be deadly to the psyche and hurtful.

Its a conundrum. One of the many that I have had the pleasure, so to speak, of tackling in the experience of being a patient.  Mostly I have come to accept the frustrations of my condition, there are times, especially when I am fragile that I react. But overall I have gotten to accept the humor in it all and so try to find the comical. 

If I find myself needing to react. I slyly ask people, "Didn't your mother teach you not to judge a book by it's cover?"

If I didn't I would be in a very unproductive place.