Wednesday, December 10, 2014

Talk is cheap

I read this fantastic article the other day called Why We Are Getting Patient Engagement Backwards and it is so spot on I can't stand it. If you haven't read it yet, go read it now, I'll wait. .....waiting..... Now I will quote:
"Our healthcare system inadvertently, yet potently, discourages engagement. It ignores the fact that the patient is already the most engaged person in healthcare."  "As physicians, we expect patients to bring test results to an appointment – because patient information is often not shared throughout our complex and fragmented systems. We expect patients to remember their entire health history, and repeat it ad nauseum as our unconnected systems fail to share. We ask them to recount the complex names of the all the drugs they are taking – and at what doses. And it’s not uncommon for these questions to be asked many times in a single hospitalization, during outpatient visits, and again each time a patient encounters a new caregiver. The reality is that patients have no choice but to be engaged. They are provided these details in an inefficient way that causes a lot of frustration, worry and fear on top of already stressful medical concerns." "We need to think less about the patient being more engaged, and focus on how we can simplify, encourage and automate engagement tools on behalf of the patient."

I'd like to share with you why I've been missing from this blog for the past ~6 weeks. It is because I have been stuck deep in the muck of this broken system that I rely on for more than I should.

A few weeks ago we had made a plan with Drews doctor to start IV antibiotics, not for an exacerbation, but for a changing baseline. I am able to quantify his cough frequency through self tracking, and I've noticed that over the past couple of months he has shifted from having no cough to having a slight cough. Our plan was to be aggressive and to get him back down to his baseline while he wasn't exacerbating. So we spent two weeks running IVs around the clock from home. I had to share the "emergency kit" with school and our babysitter, something that must be with Drew at all times and emphasizes the seriousness of having a PICC line. I had to organize syringes and medications and equipment. I had to program IV pumps and order medications and supplies. I had to remember the dosing schedule and a list of things to look for that would alert me to a problem. I had to do all of this in addition to the rest of the CF care - 3 hours a day of breathing treatments, dosing 30 pills at mealtimes through the day, mixing our M-W-F medication and remember to clean out his once again polyp-y nose - and parenting of my three other children.

Unfortunately the IVs didn't make a notable difference, and we were distracted from the issue at hand by an exacerbation that followed our two weeks. Drew was up all night coughing. I was now calling the nurse who calls the doctor who calls the nurse to tell me that she agrees with my assessment that we should start a steroid. I told them that I thought he should be seen, and they saw him. In the midst of this crisis, it was time to reorder our regular monthly meds. We had plans to go to Philadelphia for Thanksgiving and I would need this delivered before we were to go. I made the call 10 days prior to us leaving, yet 3 days before we were still without. I called back and they were waiting for new prescriptions, only no one had called to tell me that. I called the doctor and then I called back to the pharmacy when the new prescriptions were placed. They couldn't open the prescriptions when I had called and said that they would have the appropriate person call me back. They didn't. I called back the next day, the day before we were to leave, and I insisted that the medication be overnighted with morning delivery so that we would have it before we left. I had to figure out how to get everything that I needed in between breathing treatments and calls with my sons doctor about his declining health.

We decided together that we could make a trip to Philadelphia for Thanksgiving, and with a nebulizer plugged into our car outlet we made the 9hr trip. Thankfully Drew got better.

We returned home to a letter from our secondary insurance letting us know that they were dropping us because we exceeded the income guidelines. I have to wonder if they looked at the cost of CF care - medications alone adding up to around $90,000 a year (thats before insurance, not our out of pocket cost). And that is when he is well! That doesn't include hospitalizations and procedures and antibiotics - don't even get me started. Our secondary insurance covered the cost of anything related to CF that was not covered by our primary insurance. And now, they would be happy to accept my challenge if I can collect receipts and show them that we spent $14,000 on our families medical expenses over the past 12 months. The best part is that I have to HAND WRITE THEM on a chart they sent and attach copies my receipts. Because I have nothing else to do with my time....

This brings us to today. I've got the flu. I haven't left my bed since Friday night. My doctor prescribed Tamiflu and we decided with Drews doctor that he and the rest of the family should be on it prophylaxis. We spent $250 getting this medication for our entire family, which now sits on the counter in my kitchen looking like a black market pharmacy, each child with their own dosing schedule, not to mention my husband or myself. We have medicine syringes to clean and more times to remember. We have it written out on a whiteboard in our kitchen that use to contain our grocery list but was hijacked when health needs overtook life needs.

I read this great memoir last week called My Foreign Cities where the wife of a man with cystic fibrosis shared about her role in their life, and a comment she made about care giving really hit home: "My field was large and nebulous - I had no idea how to do most of the things in it, and all I could do was try anyway."

Trying anyway! That's what we are all doing and are doing the best that we can! We are the most engaged in our health and care, knowing more about stuff that we never wanted to know than we will ever want to know. We are not the problem in this healthcare system to be fixed! Amazon knows when I run out of coffee and it shows up at my door, but it takes 5 phone calls and a headache to get a prescription refilled, one that we have taken and will take for the forseeable future. I am the one tracking my sons health, knowing which protocols work for him and which do not. I am contributing to his health, and I am rewarded with more burden, as he remains unwell. I cannot even coordinate a visit to see two doctors at the same time, despite the fact that they work together, because of a billing system. It has nothing to do with their schedules, or more importantly mine.

This summer I participated in a project sponsored by the Agency for Healthcare Research and Quality. The report is out and it addresses some of these issues as they relate to data connectivity. I don't believe that technology is the answer, but I do think that it can help. To quote the acting Assistant Secretary for Health, Dr. Karen DeSalvo, "Data sharing is a critical piece of this equation. While we need infrastructure to capture and organize this data, we also need to ensure that individuals, health care professionals and community leaders can access and exchange this data, and use it to make decisions that improve health." Here's the report if you're interested in checking it out.

There has got to be a better way folks, and talking about "Patient Engagement" is not the answer. I want to see action. I hope that some of the recommendations put forth in that report will be taken seriously and help to start the change that this healthcare system, this country, and most importantly my family so desperately need.

Tuesday, October 28, 2014

At least we have a plan!

I think that our baseline is changing. Every time Drew gets sick, with some combination of antibiotics and therapies we seem to be able to get him back to his baseline, which is cough free. In CF, this is important, because one of the most recognized causes of lung damage is exacerbation, and symptoms typically mean that something is going on. We've been off of IV antibiotics for as long as we have ever been - last time was January! - but I think that it's time to start them again. I had a long talk with his doctor yesterday about new symptoms that I have noticed. He is not sick right now, but I have noticed an infrequent cough  happening, just a few times a day, but it's been around for the past 2-3 weeks. I have wondered if it is seasonal allergies, or perhaps a touch of asthma that could be treated with an inhaled steroid, but with some small changes the cough seems to remain.

So what do we do? Some people would suggest that his baseline has changed and he now has a little cough as his baseline. I'm not "some people" and I'm not ready to settle for that until we have exhausted our options in an attempt to return him to his cough-free state. We could try oral antibiotics, or even inhaled, but the bacteria that Drew has in his lungs (achromobacter), is highly resistant to just about all antibiotics. IVs are stronger than oral, and if we want to give it our best shot, we feel that this might be the way to go.

You might ask why we treat when he's not sick. Here's the best way to explain it. Imagine a barrel that we will pretend is your lungs, full of water that we will pretend is bacteria. The barrel can only hold so much before it begins to overflow. Usually, overflow is point where we would treat because we see symptoms. Antibiotics would reduce the amount of bacteria in the barrel and take it down to a level that is no longer overflowing (let's say half full since CF lungs usually have some kind of funk in them causing silent damage). So now imagine that we are in that silent damage phase, perhaps more than half full but not overflowing. And now if we treat with antibiotics, we might be able to lower the level even below the half full point and help to keep those symtoms or overflow from coming back for a longer period of time. Of course there is the possibility that this won't work and he will just have a cough from now on, but there's a reasonable chance that it will and that's what we're going with. I talked to his doctor about this for a long time yesterday, and we decided that being aggressive is in his best interest. It's certainly not what every doctor or patient would choose, but we're going to give it a try.

We hope to go in for our PICC on Friday, November 7. I am going to be out of town most of next week, and running IVs from home is both mentally and physically exhausting. It's definitely not something that one parent who is in charge of 3 other little kids in addition to the one on IVs should have to do alone, so we will wait until I get back. I don't know yet what antibiotics we will be on, but have another post coming on quality improvement type stuff where I will talk a little bit about that. I hope that they're every 12 hours because those every 8hr treatments are so draining. In an effort to avoid even more antibiotic resistance, I think we are going to try inhaled Tobi or Cayston for the week leading up and the two weeks following so that he doesn't get 6 weeks straight of Ceftazadime, the one antibiotic that this miserable bacteria still seems to respond to.

This sucks, but I feel like going into this with him well, and having a week to mentally prepare for a PICC and our crazy hectic life when Drew is on IVs is a nice way to do it. When he is sick and we get thrown into a tailspin, it is much harder to find our footing and regain composure. I don't know if this all will work or not, but I'm hopeful that it will, and at least we have a plan!

Monday, October 20, 2014

A day off

I have today off. Well, mostly off. I have set a regular work schedule for myself in an attempt to accomplish all that I want to while maintaining the much needed balance in my life to feel at ease. I have a nanny who comes on Mondays and Wednesdays and I've been trying to schedule most of my meetings and work during the times that she is there. I have some afternoons as well, when most of the kids are at school and the ones who aren't are sleeping, that I'm happy to take calls and roll up my sleeves. The problem for me with all this work that I've been doing (which I must add that I do love) is that I'm a stay at home mom. I already had a full time job when I slowly acquired a second one. I found myself working around the clock, quite literally, answering emails and taking calls, and my kids noticed. Patience was low, stress levels were high, and time-outs were reaching epic levels. That's when I realized that too many time-outs were the result of not enough time in. All these kids want is my time and attention, and if I didn't figure out a way to balance all of my new work with all of my current work, we weren't going to be a happy bunch.

The kids were off school on Friday, so we packed up the car around 9am and headed to the Children's Museum, followed by lunch and an afternoon trip to the Nature Center. The weather was beautiful and we just wanted to be outside, with no agenda. That night, there was a fall carnival at their school. We had dinner there, and then  played enough games to fill us up with carload of junk for the ride home. We had friends over to play on Saturday, and a birthday party with more friends on Sunday. We all spent 3 days together. I'm not going to lie and say that it was all fun and smiles, but I noticed an improvement in attitudes and a drop in our time-out rate. If I could put this into a pretty little chart, the Quality Improvement folks that I work with would be proud.

I hadn't opened my computer once since Thursday afternoon until last night, and even then, it was only briefly. So when this morning rolled around and our nanny knocked on the door at 9am, I had plans to find a quite place to sit and get back to business. But my calendar was free! I had nothing scheduled today, and it has turned out to be just what I needed. I ran a few errands, I did some things just for me, I spent the last hour sitting in Starbucks plugging away at the blog, and it feels so good. I am refreshed. I am not short on time today. I'm not rushing anywhere, and I think the kids will notice. When I pick them up from school in 30 minutes, I won't be fresh off a conference call or trying to tie up loose ends while they vie for my attention to tell me about the picture they drew or the game they played or the homework they have. We have a birthday party for a stuffed animal taking place today at 4pm, and I want to be there, in body and mind.

I feel guilty about working, about being away from them, even though I absolutely love what I do. They aren't going to be little forever, and they need my time and attention and I want to give it to them. In talking to a friend a couple of weeks ago, she used the term "mission path" to describe the way that she remains focused on the work that she wants to do. I've thought a lot about that, and have tried to focus in on what it is that I want to do. In work and in life, if I'm asked to participate in something that is outside of my mission path, I think seriously about the implications of choosing whether or not to participate. I don't think my mission path is well defined just yet, but I think I'm getting there. I actually said no to a couple of really great opportunities in November because my family is my priority, and I think that's a step in the right direction.

I am going to schedule a day off from time to time, and I'm going to appreciate how it refreshes me.

A Fun Announcement - Data4Health

I have been named to the Robert Wood Johnson Foundation’s Data for Health advisory committee. The Data for Health initiative will explore how health information can be better harnessed to improve people’s lives. The initiative is led by a high-profile advisory committee, co-chaired by David Ross, ScD, director of the Public Health Informatics Institute, and Ivor Horn, MD, M.PH, pediatrician and health services researcher at Children’s National Medical Center. Data for Health will be hosting a series of events in five cities across the country with participation from the U.S. Department of Health and Human Services. Committee members will hear from local leaders, consumers, and professionals from a wide range of sectors on what data is important to them, and how they might use it to help people lead healthier lives. The advisory committee will issue a report and recommendations in early 2015. Find out more:


It's been more than a week since I returned from the North American CF Conference (NACFC) and I finally have the chance to sit down and write something about it. It was nothing short of amazing, once again. The best way for me to recap what I learned is by Storify-ing my Twitter feed from the meeting. I take notes in Twitter form and then go back to read them and dig further into the points that I captured. I'll share the link to my talk up here at the beginning if you're not interested in reading through the whole Storify. I was the last speaker during this session titled The E-Patient Experience, and I realized that while the other clinicians were presenting before me (I was the only "patient") that the way they were using E was for "electronic", not e-Patient in its traditional and appropriate sense. Below is the link to my session. My part starts at the 1hr 26min mark. They don't make it easy to access this either - you might have to create a free username and password and login and all that fun stuff, but I think it's worth it :). Goodluck!

Here's my conference experience:

Monday, October 6, 2014

Don't. Tell. Anyone.

I have a great idea. Let's have a meeting. Let's invite all of the brilliant minds in CF - the scientists, the care providers, the people who dedicate their lives trying to understand the science to make this life better. Let's bring them all together, all roughly 4000 of them. Let's ask them to present what they know, to talk to one another, to create posters that display all of their amazing and literally life-saving work. And let's not tell anyone else about it. If you want to know about it, you have to have a medical degree. And even then, don't talk about it. Don't take pictures of what you're learning. Don't tweet what you hear. This is a closed meeting.

How will we learn more? How can we grow? How can we collaborate with the real experts, the patients and families who have their heads in the clouds and their feet on the ground! They're the ones willing to do anything! When they do get their hands on a medical journal, it sits at their bedside where they read it and re-read it and then read it again. They're the ones who have funded this research. They should have a right to it! They should get to decide what everyone gets to see and how everyone can share it. Even the work funded by drug companies! I am an investor. I need to take control of my kids outcomes. I have a right to this information. If anyone is going to accelerate the pace of this, it's us! Show us the damn data. I cringed when I saw a "no photos disclaimer" on the app for the upcoming meeting I'm attending. I wish it also said what would happen if you were caught breaking this rule so that I could make a educated decision on whether it was worth it.