Wednesday, November 30, 2016

I'd love to...

It's been a while since I've found the time to write a blog post. I'm writing for Eli Lilly now, and you can check out some of those posts here --->  https://lillypad.lilly.com/?auth=76 I find a lot of the content I'm sharing over there to be stuff that I would also share on here, so no sense in duplicating!

We decorated for Christmas the day after Thanksgiving, marking the start of my most favorite holiday and time of the year. Christmas music is being piped throughout the house (and car and headphones) and reflections of the past year have inevitably begun. We had a tough go for the second half of this year, and we're sort of still in it. If you recall, Drew lost a significant amount of his lung function over the summer before we identified the culprit - a fungal infection. We treated him with anti-fungal medication and he thankfully improved until there was a second unexpected drop near the start of the school year. He had gotten back up to 91, and then in September dropped back down to 78. We had discussions about what might be causing it and what we should do to treat him, and decided to temporarily stay the course on the anti-fungal medication until he reaches and maintains a baseline on it, giving us confidence that it is both working and that the infection is under control. You may recall (or maybe not) that he had a fungal infection last year around this time. We started the anti-fungals for 3mo and he improved, so we stopped the treatment, and then by June he had lost 30% of his lung function, maybe not so mysteriously after all. I suggested that perhaps we hadn't had the infection under control as we had originally thought and, like fungus does, it slowly crept back wreaking silent havoc. I want to make sure that we are confident that things are under control this time before we change course, as a newer article suggests that fungus can become quite resistant if treated, if the medications used to treat it aren't used properly. The options seem to be, per this article anyway, treat the fungus and increase its adaptive skills, or not treat it and allow the pathogen to settle in the lungs. Not treating wasn't an option for us because of the impact that it was having on his lung function.

It's complicated, this disease. We seem to have the bacterial load in his lungs under control. Most research shows that bacterial exacerbations are a leading cause of lung function decline and lung damage in CF. But once we finally got the achromobacter under control with years of treatment on inhaled antibiotics and steroids, we seem to have traded it for a fungal infection. Did we cause the fungal infection? Perhaps we did, there's not really a good way to say. Is it better to have a bacterial infection or a fungal infection? I would probably argue that a fungal infection is *better* given that these is little research that shows the impact of a fungal infection on the progression of disease. I do not know if there is evidence to support the contrary, or just lack of research on this altogether. Either way, I'm interested to learn more and hope that the CFF will continue to study this.

He's got a cold now, coughing in his sleep and when he's running around and playing. We've added extra treatments which has him crankier than ever, but it's necessary. We've been going in to clinic for PFT's every two weeks and his numbers are remaining pretty consistent - 78, 81, 82 - but I'm not so sure how things will look with this new cold, perhaps something he picked up when we were in clinic for one of those appointments. Despite their best infection control practices - recently even declaring that the spread of infection among patients in our clinic had come to a halt with new infection control practices, which is great news - going into the hospital remains one of the most dangerous places for Drew to be. There are lots of sick people coming here for care, and even though we wear a mask and don't touch anything, he always seems to catch something when we have to come here. We should be able to use home spirometers to monitor our lung function. We should be able to track our weight from home, and other symptoms, and communicate what we learn with our care team, eliminating the need for unnecessary visits, saving everyone time and money, and perhaps even improving health. Machine learning can enable this, and should. While our center was using the Orchestra platform (which is no longer), we did start to see a longitudinal view of patients health shared with the care team. We did improve inter-visit communication, and intervention at more appropriate times rather than just when we happened to have a visit scheduled. It didn't reduce the number of times that we *needed* to come into clinic but it could have. I highlight the word *needed* as this is an evidence based medicine metric, a guideline put forth by the CFF for all patients, and embraced by all clinicians, regardless of whether its the right thing for the patient. The care teams aren't interested in reducing clinic visits below the required 4x a year. Or maybe they are interested but just can't becasue the CFF uses this as an accreditiation metric, requiring them to do this or find a way to improve rather than working to understand, from patients, why they aren't coming in 4x/yr and how we might work together to optimize care and outcomes according to the patient priorities. Hopefully our learning network will fix this. I digress.

I hope he's well for the holidays. I got this crazy idea to take my family to NYC to see some cousins the week before Christmas. What crazy person wouldn't want to drive 24hrs over 3 days to spend a night in a matchbox sized hotel room to see family and New York City at Christmastime?! I'm sure traffic will be delightful. At least we can stream Christmas music in the car!

I hope he feels well enough to open gifts with excitement and delight on Christmas morning, and that we don't have to pull him away from new toys to do extra treatments. I'd love to, for just one day, forget all of the medical stuff. I'd love to wake up and not have a schedule. I'd love to go out to dinner and not worry about hand sanitizer and enzymes. I'd love for him to run around outside, maybe in the snow, and not come back inside having a coughing fit, and rather than breathing treatments, have hot chocolate while all of the clothes defrost into a puddle in my foyer.

I've declined antibiotics for him since September because I don't think he needs them. Maybe I'm wrong, but I'm trusting my gut this time. We will go there if we need to, but for right now, we will do our treatment and take our medicine and listen to our Christmas music and enjoy this holiday as much as we can.

Sunday, November 13, 2016

Creating Space for Innovation in the Government



Tuesday, November 8, 2016

Collaboration and Culture Change: The Valuable Role of Storytelling in Health Care Improvement

This post originally appeared on LillyPad, a blog for Eli Lilly Pharmaceuticals, where I write as an ePatient Advisor

Editors Note: Over the next few weeks we will spend some time listening to the stories of some ePatients who have been collaborating together on ways to show the value and importance of patients as partners, collaboration for improvement, and connection & learning through “the network” for healthcare improvement. It’s important that these stories be told beyond our Google Hangouts or private Facebook groups or dinner tables and pushed more deeply into prominent places in our society because you can’t have culture change without collaboration and you can’t collaborate on what you don’t know about.

There’s this weird feeling that happens after I return from a health conference. I’m so full of new ideas, having spent several days away focused only on the things I’m working on, being around only people who share my passions in this space. I get to put aside breathing treatments and medication ordering and insurance fighting as I listen to amazing presenters share about the phenomenal work they’re doing, trying to translate what they’re doing to what I do, always considering ways that we might be able to help one another. I eat lunch with unlikely partners and I’m fascinated by the wealth of knowledge they bring, wondering how on earth I got so lucky to have the opportunity to learn from them. Sometimes I’m the one presenting, proud of my work, anxious to share with others the ways that I believe what I do can also help them and their communities. Then there is dinner where we pack up “work” for a while and build relationships, getting to know one another on a more personal level – our interests, passions, families and friends. There’s a buzz that fills your soul and lifts your spirit.

Through these conversations, we realize a shared humanity and how our lives really are the fuel for the work that we do.‌ When I hop on the plane to leave these meetings, I’m so full of energy and renewed hope. Then just like that, I am back to the rat race – preschool drop off, signing school folders, sporting events, field trips, breathing treatments and appointments and medications and worry. There’s a buzz at home too, but a very different buzz. I’m so grateful to be home to the hugs and the very important stories about who sat next to whom on the bus, trying to squeeze in dinner between homework and basketball practice, turning on a movie so that I can find five minutes of quiet to order the medication that we will run out of in three days. But no one here understands. Here, people are doing their jobs and living their lives. They didn’t get to experience what I just experienced, what changes me just a little bit every time it happens. And I realize that without this buzz at home I wouldn’t have the other.

There’s absolutely no question that I would trade everything to take cystic fibrosis (CF) away from my son and our family. There are days when I wish more than anything that I could go back to being “just a mom,” scheduling playdates and going on nature walks, not having to sit at home waiting to sign for this month’s medication delivery or change our plans due to an unplanned illness. Yes, CF is a horrible disease that just takes and takes. I cannot change the disease, but we can control how we respond to it.

CF has expanded my friend circle and my world view. I have such a deep appreciation for the experiences of others, and I often learn the most from the people I don’t agree with. This is what it means to be an advocate - loving so much that your heart could burst, and then channeling that love and balancing it against the fear of loss. There isn’t a right or wrong way to be an advocate, but it’s something that those of us in the trenches are uniquely qualified for. Everyone can stand up and tell their story in an empowering way, but sometimes diagnosis or disease progression pushes us closer to this. As we work in health care improvement as patient advocates, there’s a focus on data. But data, while it can persuade people, doesn’t always inspire them to act. To quote an amazing article on the power of storytelling, “To do that, you need to wrap your vision in a story that fires the imagination and stirs the soul.” This, I believe to be true.

I’m honored to be able to share my story with the world, one that challenges the paradigm for how you can work with patients and caregivers. ‌Our lived experiences with research can help to grow our collective understanding of the benefits and challenges of participation‌ – what is it that each of us want, and how can we collaborate to achieve that. Together, we can make the shift from reactive to proactive care. Together, we find answers and change outcomes.

The new musical Hamilton is a powerful story that celebrates our founding fathers, who launched a new era of government. I’d like to honor some of the “founding fathers” of a new era of patient partnership in health care. They have helped to create the foundation upon which this great community is being built. It is through our stories weaving the thread between us all that we will continue to learn and grow. Over the next few weeks, you will hear from advocates in both the diabetes and cancer communities sharing their stories related to the idea of patients as partners, collaboration for improvement, and connection and learning through “the network.” So, in the words of Lin-Manuel Miranda as Alexander Hamilton, “Let’s raise a glass to the four of us, tomorrow there’ll be more of us, telling the story of tonight.” We hope you enjoy our stories.

Monday, October 10, 2016

A Letter to the CF Learning Network

We all have the unique opportunity to see the world from a different vantage point. I, as the mother of a child with CF, first saw this community as one of fundraisers, patients and families with an endless hope for a cure, working tirelessly to make connections and fund research to cure this disease. The more I got to know these folks, I started to see teachers and fathers and technologists and marketers and musicians and policymakers. I got to know the care team that was helping me to care for my son, and I realized that they were also soccer moms and artists and advocates, quality improvement specialists who weren’t just caring for my son, but caring for my community. I got more involved and started to see through my work and social networks how many different groups were working on similar things – parent & patient groups, the CF Foundation, pharmaceutical companies, the government – yet all unaware of the work of the others, and I started to think about how we might help those people and that information to intersect so that more people could learn together and time could be saved.

And then I would get discouraged or frustrated – there are so many moving parts! How could I get the care center in City A to do what the care center in City B was doing that seemed to be addressing the specific issue they were having? How could I make sure that my son was getting the best, most personalized care for him, not just the best care that his care team knew about? How could I share access to all that I’ve learned so that others could benefit from it as well? I shouldn’t have to stumble upon information on Facebook at the right time to find benefit.

Sometimes we don’t know what we don’t know, but I think it’s safe to assume in 2016 that if you don’t know the answer to something, you can quickly figure out how to find it.

I see information being shared every moment of every day – doctors like Raouf sharing the success of implementation of the chronic care model and the work that he has done as the head of our pulmonary department to achieve this success;  people like Emily Kramer Golingkoff starting her own research foundation with an urgency for progress because the trajectory of the science isn’t fast enough to save her life;  folks like LaCrecia who understand the realities of CF centers of all shapes and sizes and the need for a standardized yet  personalized approach to improvement  after having served as a coach for many years. Everyone has something unique to offer, something complimentary to what the rest of us each bring. People like Jim Murphy with compassion and empathy that partner with families to understand their unique needs and work tirelessly to minimize the impact of the disease on our lives. Adrienne likes to read, cook, crochet, hike and travel the world in addition to the clinical expertise and experience she brings.  Bruce’s leadership role enables him to help different groups both within and beyond the foundation to mingle for improvement and change. Breck is a fundraiser, a storyteller and an advocate, not only sharing what she knows but always eager to learn and connect. And folks like Tracey and Sophia and Sarah help us to stay on track, organizing our work and helping to create a roadmap out of the many pins we drop. Michael says yes. He encourages us to try new things, taking risks, and leads by doing.  I bring and insatiable curiosity, a connection to a strong network of like-minded  folks desperate for change, and a never-ending hope that people like Drew can be well, retaining the autonomy to make decisions in their life according to their own priorities, not according to cystic fibrosis.
People make connections in a network all the time. It’s not something we are advocating for. It is something that happens. I could go on and on about the strengths that we all have, but I suspect that as we part ways and reflect on the time we spent together we will all be well aware of the value of the contribution that each of us is making to this work.

There is a great TED Talk by a woman named Angela Blanchard that talks about how we, as a society, as people wanting to help, are trained to look at the problems - the lacks, gaps, needs, wants - the broken stuff, and how we can’t build on broken. She suggests that perhaps instead of looking at all that people don't have, we should start to look at what they do. I think this has a lot of relevance for this learning health system model we are moving toward. I can give you the example of an ENT appointment a few months ago. When we sat down in the office the nurse said, "So we have Andrew here, a 5yr old male with a history of cystic fibrosis, tracheomalacia, pancreatic insufficiency, more bronchoscopy's than I can count, chronic sinusitis, a bowel resection, ileostomy, and airway abnormalities. His medication list is about 4 pages long but I've gotta go through it so here we go." I interrupted her to say, "There’s a lot right with him, too." She chuckled and we moved on.

What if Angela Blanchard is exactly right and we can't build on broken. What if the answer lies in our ability as a team - patient and provider and researcher and foundation - to share what we have, and build what we can to find what we need. What if we can't see the solution by just looking at the problem?  It is about partnership, but a different kind. A partnership focused on what we each have rather than what we each need.

The TED talk goes on to say “We've all been in situations, as humans, raw and painful and excruciating moments, and it's hard in those moments to think about asking people what they have, talking about their strengths, what they're good at.”  But much like so many of us in this room feel compelled to help, in fact were trained to help, the patients/caregivers, we want to contribute too.  All of our stories matter. We want to tell you what we can do and what we do know as that's the first step on my path to a new story. This gives us all hope, meaning, a sense of belonging.  Think about how we might be able to shift away from the post-traumatic stress of diagnosis or disease progression and toward post traumatic resilience, something that science has proven comes when one feels they are making a meaningful contribution. Think about how that might translate to successful transitions, adherence, sustainability, success. We all have the capacity to imagine a future different from the life we live. The job of those who want to help , those of us in this room today, is to stand together.

I believe that success of our work will be dependent upon this enhanced appreciation of what we each have. I encourage you to listen to one another, like really listen, especially when you don’t agree or you hear something unexpected, for its these moments that we can most learn from. Its something I’ve been working on and its paid off big time.

My wish for the CF Community is that we can work together to figure out how to pull our strengths together to create something better than any of us can create alone, laying the tracks for the greater CF community to see the potential in themselves and contribute to create change.
We’ve had an incredibly impressive group of folks in this room for the past two days, from White House Champions of Change  to esteemed scholars, members of PCORI and the Institute for Healthcare Improvement and people with CF and parents who find the time to step away from the demands of this disease to help. And that’s just whose in this room. When you think about the CF Community more broadly and consider all that they have and all that they do, there is no doubt that we will succeed in our work.  Thanks for being here and for the unique gifts that you bring. Let’s do this!!!


Sunday, September 25, 2016

Let's talk about evidence

"We don't seek the painful experiences that hue our identity, but we seek our identity in the wake of painful experiences."

I don't know where this quote came from, only that I find so much truth in it. If whoever wrote it happens to read this, raise your hand so I can learn more from you.

Cystic Fibrosis sucks so bad. You can't usually see it, yet it forces you to act - restraining your kid for necessary blood work to make sure the medication we're taking to save his lungs isn't killing his liver. Childhood playtime after school is stolen from us as we sit for hours doing breathing treatments and airway clearance instead of going to the park without an agenda. A hug allows me to literally feel a mucus plug trapped deep in his airways, something I can loosen with a few aggressive beats on his chest and I do it without warning as he would deny my offer to help because of the pain it causes him while simultaneously offering some relief. And I sit on an airplane on my way to my second conference in two weeks, having received great news in the 4 days I was home, and yet I cry because I know that the relief I feel is temporary. Hopefully optimistic but not naive. Despite our best efforts this disease will progress. I can sit by the pool at my favorite hotel in Palo Alto so incredibly grateful for these people I've met because of this disease, and cry as I walk back to my room moments later cursing the world and wishing it all away in a trade for normalcy. I don't know normalcy though, I suppose. This is our normal. It's breathtaking to see the world in this way, a gift not many people get. And I love it and hate it equal parts.

Drew's lung function tanked this summer. We saw his doctors many times, and I used my personal network to crowd source ideas for what might be wrong. Early on, there were suggestions by my peers that a fungal infection might be the culprit. With no symptoms except for a rapidly declining FEV1, we spent countless hours troubleshooting - trying everything in our "evidence-based" bag of tricks. There's not significant evidence to suggest that fungus causes lung function decline in people with CF. Or I guess I should say that there's not peer-reviewed published scientific evidence. The "evidence" that I have, the experiences of the people living with cystic fibrosis who have lived through our same uncertain hell, is often discounted. And I get it, really. I am pro evidence-based medicine. I just can't help but think about the value of the individual human experience we are missing.

Despite there being no physical symptoms of exacerbation - data that I have based on our prior experiences, things that are in fact documented in his EHR - we opted for treating this like an exacerbation because we didn't know what else to do. The "we" I speak of is us and his care team. The first step was an oral antibiotic. Drew has never responded to oral antibiotics. I was skeptical of this plan but ultimately on board. After 10 days, there was actually increased decline. He has found benefit from steroids in the past due to the wonky nature of his airways, but I can identify with accuracy the situations that will be improved with steroids and this wasn't one of them. We tried anyway. The downside was outrageous mood swings. While medically induced, I still expect certain behaviors from my kids, and its absolutely heartbreaking to watch your 6yo, who feels like he's going to jump out of his skin and not understand why, sob in his bedroom for hours because, medication or not, hitting other people is not ok. The steroid may have slowed the decline, but his lung function continued to drop.

When we have to make the hard decisions about whether or not to try IV antibiotics, more frustration and disappointment came out of fear, from all of us, that yet another treatment, another procedure would render the same results and we would be left with even fewer options. It's so hard to balance these decisions. His health is a priority, but so is his life, and living means so much more than being alive. Can I take away the joy of the pool or the promised vacation with the hope that this could put us back on track? How could I convince him that this is the right thing to do when all of the preventative medicine he takes, the stuff we tell him we must do for hours every day to keep him healthy has left him so very sick. What the fuck kind of sick logic does this disease demand?

We opt for a combination of IV medications that we hope would target the bacteria that we suspect might be causing the problem, weighing dosing schedules against our ability to administer them from home because there's no way we are admitting him to the hospital when he looks and feels fine. We trade sleep for this decision and our whole world pays for it. Work commitments change and home routines suffer as patience wears thin. Tired and terrified while pretending to be neither is a bad combination. And yet we continue, a constant barrage of choices in our faces, very serious ones with real consequences.

They told us when he had his PICC placed that we might want to have a conversation with our team about a port given the increasing difficulty with placement of a central line due to the fact that he's had 9 in his 6 years of life and scar tissue is getting in the way. With some ativan to take the edge off, we both cried as they stuck him, then stuck him again. His fear has scars showing the distance he's come. I have fear too, but all of my scars are on the inside. I'm a little tougher to break, and each time we do this feels a little more routine, a little more scary.

The IV meds didn't help either. With our lung function creeping closer and closer to 70%, we re-group for another team meeting. I want to know all of the options. We decide on a bronchoscopy, something that will allow them to get a reasonable sample of what might be in his lungs and enable us to target our therapy. Why didn't we start here?  Everything comes with its own risks, and the care team was hopeful that we could address the problem more easily. I trust them and agreed with their plan. I also asked about the risks of treating with an anti-fungal medication. After all, we just followed the script for oral and IV antibiotics and also a steroid, each with its own risks, especially given that they seemed to be the wrong choice as they showed no clinical benefit and the risks of antibiotic resistance in this population is enormous. There is not evidence to support a fungal infection causing a decline in lung function, or "published, peer-reviewed, scientific evidence" anyway. There is a surplus of anecdotal experiential evidence.

With a family vacation just a day away, we go to the hospital for this outpatient procedure. I do my best distraction song and dance while they give him sleepy air. My husband and I don't even go to these together anymore because we've been through them so many times, and life and work don't pause for this disease. I anxiously wait to be called back to see the doctor in what I can only describe to be the purgatory that is the same day surgery waiting room. Her words have so much power to change my life and I'm terrified. But all looks good! His lungs look as good on the inside as they sounds on the outside and we are left wondering. We have to wait 5 long days to see what grows on the culture, to see what explanation we might get from another piece of data. I've convinced that I lose about a day of my life in this unavoidable worry that comes from this unavoidable waiting.

By now, his doctor has given me a prescription for the anti-fungal medication I've been asking for. I promised not to use it until after the bronch, We agree that we have nothing to lose by starting it while we go on our vacation and wait for our results. When the results do come back and show that he has a fungal infection, we exchange emails with his care team about their lack of optimism that the anti-fungal will have an impact given the type of fungus he has, a more common household name I'm told, but without other options it seems to be the last resort and we go forward.

After 4 weeks on the treatment, we wake up early, get our treatments done before the sun comes up, and head into the office for an assessment. I have a preference for the 7:30am  Monday morning appointment as I believe it lowers the cross-infection risk, something that no evidence exists for. It gives me some resolve to have this time slot and I'm grateful to the team that recognizes that and works to accommodate me. He's up to 84! It seems to be working! He's re-gained more 10pts of that lost lung functions and we are elated! We decide to stay the course and after another 4 weeks he is up to 91. I express my joy to his care team who is equally delighted, admitting their early skepticism about this being the cause of the problem and acknowledging the treatment as the reason for our success. I certainly didn't set out to prove anyone wrong, only to make him well, but it's nice to hear that they are learning along with me.

This is a happy story, but it's not the end of the story. We will have treatment decisions to make again next month - stay the course? Make a change? What changes will happen that will be out of our control? Will the next culture show a bug that's completely resistant? Is there anything I can do to prevent that? To protect him?

The past two courses of IV antibiotics that Drew has had have not been needed. We treated a bad case of acid reflux and a fungal infection with hard core antibiotics. We followed the guidelines and used decision trees and made the decisions that we felt we had to make, and we were wrong. Drew has been on inhaled antibiotics - 2 different medications alternated in 15 day cycles, inhaled 3x a day, everyday for the past 3 years. In those 3 years he has not had a bacterial infection in his lungs, an "exacerbation". In 3 years he has not gotten sick. He's been on IV and oral antibiotics that he hasn't needed, and been sedated countless times. He has been admitted for central line infections for central lines he hasn't needed, all because we followed the rules. I don't think we made a mistake, we did what we knew how to do. But now that we know better we need to do better. I wholeheartedly believe there has to be a better way. We might talk about the risks of exploring medications or procedures that lack "evidence", but I also want to talk about the risks of evidence based medications and treatments that we use when we don't need them. How might we get the right thing to the right person at the right time, every time? How might we improve the mental health of our patients and caregivers who are rightfully distraught over the lack of answers to what should be straightforward questions? Why is there still so much uncertainty in medicine? What responsibility should we put on people to advocate for themselves, tracking their own outcomes and then sharing them with the rest of the healthcare system to enable personalization of treatments, and then machine learning to aggregate all of these N of 1's, improving population health through the spread of personalized solutions.

Some new opportunities have recently come my way to improve things within the healthcare system. My goals remain the same - right person, right solution, right time, every time. I think success is more than just improved outcomes just as living is more than just being alive. Success for me is influence. When more people believe that this is possible, when they challenge the status quo and try out of the box solutions, that feels like success. I know I'm making a difference. We are farther in this culture change than we were 5 years ago when I realized my purpose in all of this. As I fly to another healthcare conference, my second in two weeks - a conference where patients and caregivers are being introduced to the world as a symbol of action and influence, a conference where our participation is being fully financially supported - I know that my role is to honestly and vulnerably share these stories and ideas for change. I've figured out how to fold the worst narrative of my life into triumph, and that for me is how I measure success.



Thursday, September 8, 2016

Patients Included. But are we respected?

This post originally appeared on my blog in October of 2013.

"Any man or institution that tries to rob me of my dignity will lose because I will not part with it at any price or under any pressure." - Nelson Mandela, Long Walk to Freedom


A few weeks ago, I was asked to be a part of a Cystic Fibrosis work group at a hospital on the east coast under a grant from the Patient Centered Outcomes Research institute, or PCORI. A colleague had recommended me for the position, knowing my passion for collaborative efforts in improving outcomes and the value of the patient voice in research.  Below is an excerpt from the email that I received:


PCORI was founded under the ACA to fund comparative effectiveness research that improves the information available to patients in a meaningful way. Specifically, PCORI has two goals: further engage patients in research design, and reduce the gap between research results and patient knowledge. The CDRN opportunity grants institutions money to develop a large multi-million patient data warehouse for researchers (from around the country) to conduct research - both prospectively and retrospectively. PCORI will fund seven of these networks around the country to form one national network. If awarded the grant, our team would like to offer you a role as a Cystic Fibrosis Community Workgroup member.

My interest peaked, I wrote back and a day later had an interview and was submitting my biosketch and a letter of support. I made them aware of the other work I'm currently involved with to ensure there would be no conflict of interest, and expressed the need to weigh the time commitment and opportunity for compensation with these other projects. Then, as if to define how they value my knowledge, experience, and expertise, I received this reply:


While this particular position will likely be unpaid, this is an incredible opportunity to directly influence the research efforts around CF and will provide you with access to cutting edge researchers in our city.


Is my time and participation not valuable enough to compensate?

Later that week, I packed my bags and headed to MedicineX in Stanford, California, a conference that positions itself as a catalyst for new ideas about the future of medicine and emerging technologies. At this conference, there were patients and clinicians, caregivers and technologists, entrepreneurs and researchers and others from the industry. It’s difficult to explain the experience of being at a conference so full of energy, excitement and hope for better care of rare diseases and chronic conditions, better interactions with the healthcare system, and how the only way to improve is collaboration and teamwork, valuing and trusting one another, in every single possible way.

During the first day of this conference, PCORI -- the organization offering the grant mentioned above -- was presenting a panel on the importance of involving patients in research. I wondered about the offer I had received: Was it the institution that could not offer to compensate me for my time? Or PCORI that isn't accommodating patients who participate in the research by appropriately and fairly compensating them? Or maybe just not all patients? Some view the amount that I work to improve health and care in Cystic Fibrosis as remarkable. I view it as necessary. If I had endless capacity, I would do it all. But remember, I have a seriously and chronically ill child that I am caring for, in addition to 3 others, and a husband, and a couple of fish. Unlike many researchers, I don’t have an institution or grants paying me a full time salary to participate in such research.

My reaction: Don't take advantage of the knowledge and experience that I have that you want and need to create a system that works for me. Appreciate me, and embrace me just as you would any other member of your team, and just watch how far we can go together.

A huge barrier to true patient-centered care is the failure to see patients as equals to the other contributors in this system. Let's not forget than in medicine, the patient is the only one who is expert in her experience. Should the hospital that offered me the position in their workgroup receive the grant from PCORI at the end of the year, I will participate and my participation will not be in vain. I said yes, regardless of compensation status, because I know and appreciate the value of this project. I have a unique perspective to bring that I believe will add value to this research and benefit others in the community. I said yes, because so many other people who have expertise and passion and value to add don't have the time or the voice or the energy to do it. I believe that our story, in the end, will be one of success. But to quote an incredible patient and advocate that I had the great pleasure to meet in person this weekend, "Not every medicine story can have a happy ending. It's not the ending that makes it a success."

How much farther and faster could this patient-centered research go if it weren't so hard to be a part of it?