Stream of Consciousness on the NACFC, Patient Engagement and Hope

Last week I attended the North American CF Conference in Salt Lake City, Utah. After I'd gone last year, I made it my mission to attend every year until the value of having patients present was fully appreciated and I'm happy to report that we're getting there, but we still have a long long way to go. There were actually a few sessions this year specific to the value of including patients and families as a part of the care team, partnering together to improve outcomes and changing lives. My goal, leaving the conference this year, is to find some ways to quantify the value that patients/parents bring to the table and share with all 4,000 attendees next year how I believe that the missing puzzle piece in this quest to cure cystic fibrosis is us, the very people living every day so desperate for a cure. 

On my way to the conference I started to read a brilliant book called "Critical Decisions" by Peter Ubel. It is a passionate plea for patient empowerment with quotes like "The new revolution in medicine needs to be less about power and more about partnership. The best decisions are often shared." and "We won't achieve true shared decision making until we prepare physicians to interact with prepared patients." and "Modern patients have a duty to be informed in health care decisions." That last one really got me thinking. You see, the NACFC isn't open to just anyone. It's a conference held for 4000 or so doctors and researchers and other clinicians, but not specifically for patients or families. We're not totally excluded but it certainly isn't encouraged and definitely not made easy if you decide you want to go. There are some hoops that you can jump through to get yourself there, if you have the $575 to pay your way or are lucky enough to have someone offer to send you. 

The purpose of the conference is to share the latest and greatest in scientific research with others in the field to make better informed decisions regarding the health of CF patients and ultimately find control of and a cure for this disease. There's no doubt in my mind that that is going to happen, but without the participation of the ultimate stakeholder, the patient or the people that are fighting for them (families), it's going to take a lot longer.

"Modern patients have a duty to be informed in health care decisions." There was so so so so much valuable information that I came across at this conference that isn't available for others in the CF community, unless of course they paid their way and got the book of abstracts and sat through endless talks full of medical jargon that had even the most brilliant physicians googling terms. It's not fair that I, having fought and pushed and proved my value to our clinical team to the point where they sent me, am the only one who knows all of this stuff that could be life changing for so many. Stuff like the re-introduction of Atalauren to the drawing board for nonsense mutations. That, my friends, is hope for some people in some hopeless situations. And hope can carry you a long way. But no one knows about this but me and a handful of people who follow me on Twitter. Sure, many clinicians now know too, but there has to be an appropriate context for them to bring this up with their patients, all the while balancing the plethora of other valuable information that they think is important for their patients to know.

I learned about the dangers that inhaled corticose steroids pose to CF patients, increasing the risk of culturing non-tuberculous mycobacterium 5 fold, while really showing no signs of reducing inflammation in the CF airways. That's important, and perhaps even life changing for some. But unless you were a doctor or one of the few parents or patients privy to that information shared during one of the sessions at the NACFC, you are still in the dark, and that's not acceptable.

Doctors cannot know it all. Patients have a duty to be informed in their health care decisions, but as ePatient Dave says it best, "It's perverse to keep people in the dark and then call them ignorant." It is the patients themselves that have contributed to and participated in the research that these brilliant doctors and scientists are doing, but yet we do not have access to it. Bob Beall gave a heartfelt "thank you" to patients and families, for without them we wouldn't be where we are today. I propose a "thank you" and a program next year, sharing with them the very research that they enabled. The research will go farther, the puzzle one step closer to completion, if you embrace patients as partners.

I can almost guarantee you that I was one of the few who read nearly all of the 600 or so abstracts combined into the program that was the 2013 NACFC. Doctors don't have time to do that nor should they be expected to. Researchers don't have specific interest to do that, looking at the things that are relative or important to them and then moving on. But I, the parent of a patient with an incurable, life shorting disease, I don't have time not to. My ears listen carefully to every option, every alternative, every mild suggestion that there might be hope. My exhausted being and worn out kid try novel approaches and treatment options, in clinical trials and independent of them. Our doctors are deciding what information to share with us, some more than others, some better than others. Some share all of the knowledge and options that they know of, but it's impossible for them to know it all and it is our duty as patients to seek out what we need and work together with our clinicians to help ourselves and to help others.

I overheard a conversation between two (i'm assuming) doctors that was narrow minded and disheartening. During a presentation on the role of viruses in a pulmonary exacerbation, the speaker, who probably had a degree in some sort of medicine that I'm not even able to appropriately pronounce, was getting slightly deep into molecular biology and from the tone of the conversation in front of me, somewhat off topic. The one doctor said to the other, "This guy needs to move on. If people want to learn about this they can find it in the journals." But we can't! We can't find in in the journals because we don't always know what we're looking for. And with all of the information being shared here, these doctors and researchers aren't going to have time to do it, if they even remember to! And "the journals" cost money, something like $15/article. It's like our co-pays, no big deal to most families just needing to refill a prescription here and there, but our co-pays are over $6,000 every month, so yes, I will find ways to alleviate the burden and get us access to what we need because not doing anything is simply not an option. Putting this incredible information into journals and then storing them in a vault is not doing us any good.

All of this work that I'm doing to design a collaborative chronic care network for Cystic Fibrosis is for reasons like these. We "patients" are finding ways to get what we need. We are organizing ourselves and talking to each other and we are asking clinicians and researchers and other stakeholders to join our conversation since we haven't been invited to theirs. Everyone is so afraid of taking that risk, worrying about patients taking something out of context or their identity or reputation being tarnished because of something going wrong online. I can appreciate those fears, but I implore you, take the risk. Dr. Wendy Sue Swanson said it best at MedX during a Masterclass on engaging through social media - If you're a moron in real life than you're going to be moron online. Don't be a moron. Why am I the only person who doesn't seem to be afraid of things going wrong, but rather looking toward the possibility of all that could go right. What if my patient reported data could be appended to some highly clinical research to bridge that gap and complete that understanding, leading to the development of new treatments and therapies and ultimately curing this disease. Again, I implore you, take the risk!

I overheard another clinician speaking about how it's their (clinicians) responsibility to educate patients on how to do different treatments and that if they're not doing them appropriately then it's a failure on the clinicians part to appropriately educate. What if the patient understands perfectly well all about the treatment but just simply doesn't want to do it? I will agree with that doctor that it is a failure, but not a failure to educate. Rather, it is a failure to engage and empower and embrace that patient as a partner in their own care so that you together understand the relationship and how you can work together to preserve health.

If I create data and you create data and we share that data with one another and then we are able to identify things in our data, and then we get his data and her data and add it to our data, before we know it we have our own little research going on. The value of that data shouldn't be diminished. We control our research because it's our data. The data that researchers have is technically our data too, but somehow they own it and we can't always get it back. So we (patients) started collecting data on our own and learning things about ourselves, individually and collectively. Since we can't access all of the brilliance that already exists, we are accessing what we can and are making informed medical decisions with it. Just imagine how much father we could go if we put this all together. It is not rocket science, but rather an activity taught even to my preschoolers and it's called teamwork.

Toward the end of the conference I was speaking with some folks from a variety of positions of power and influence in the CF community, both within and outside of the CF Foundation. Both asked the same question - what are we supposed to be doing? How do we engage patients in ways that are appropriate and useful? How do we curate information for our patients and families? How can we be truly helpful? My answer to them was simple: Take a risk. Join us. Participate in our conversations. Listen to our feedback. Embrace us as partners, not recipients of some service or tool that you offer. Show us that we are truly in this together by holding our hand and combining our efforts and working together to create and test and implement tools and solutions that will aid in the development of a cure for this disease. I hope that they took me seriously because I meant it.

There's so much more that went on at the conference of value to me and to patients and their families that I don't even know how to put it all down on [virtual] paper. But I'm putting out there right now that I want to help you. I have the resources from the conference. I would love to help whoever needs my help by searching through the abstracts and posters to find any information that might be of value to you. Email me, tweet me, Facebook message me. I will try to put as much important information out there as I can, but if there is something that you're interested in or scared about or just wondering if there was any discussion around, please ask me. I want to help. I believe that we are the key to the cure.