Patient Research Exchange
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At the end of the day we are either a patient or are becoming a patient. The distinctions between researcher, provider, and patient are functional descriptions that exist in the context of a relationship, but be we researcher, provider, or patient advocate at the end of the day we’re all patients.
The question that we have to constantly explore as patients (in fact or becoming) is what do we collectively expect from medical care.
The word collectively here is intentional. Health care is a collaborative act. The process from bench to bedside involves many highly specialized, talented, and for most patient anonymous, people. All of whom are organized to extend life in their communities and in far off places. It may appear at the point care to be a conversation between provider and patient. But across the globe we have built learning, financing and delivery networks to address the ills that plague us all. How we provision that care in turns of who has access to what does not negate the fact of this ongoing collaboration.
Our day jobs as researchers, providers, patient advocates may impose upon us priorities and urgencies that cause us to believe that we are different with a unique purpose, but the point in fact is we are all patients who need or will require health care. Perhaps an important role for those who do not work in some aspect of healthcare (research, financing or deliver) is to remind those who do that they are us and we are them.
It seems to me what we are discussing here is how do we make more visible, how do we give voice to the patient (us) who has always been central to the process. The movie producer Alfred Hitchcock spoke about the MacGuffin” — the mysterious object in a spy thriller that sets the whole chain of events into motion. Patients are not the MacGuffin in the health care store. They are not an ill-defined mysterious object around which health systems turn. They, we, are the process.
What makes humans unique is our ability to build health systems to address the challenges of sustainability—long, quality filled lives. I hope this forum will provide the space for us to realize and explore our “patienthood” in a globe context, adding real texture to health systems that are growing with sophistication.
I am the father of a childhood cancer survivor and a patient advocate for children with rare cancers. Pediatric oncology faces many of problems this Patient Research Exchange attempts to address. Research with pediatric cancer is severely limited by lack of funding, small patient populations, and limited interest and financial incentives to pharmaceutical companies. I think we can change all this by becoming directly involved with research for pediatric cancers.
I have spent the last 2 years personally advocating for the launch of a phase I clinical trial with a new compound thought to target the “cancer stem cell” for Wilms tumor, which my own daughter suffers from. I have developed a network for children and families with epithelioid sarcoma, and have used this network to identify a patient heading into surgery, and then obtained this patients tissue to run several genetic screenings, and even to attempt a PDX mouse model with the tissue, which will be the world’s first and only epithelioid sarcoma PDX mouse model if successful. The goal is to provide this information and mouse model to researchers doing work which could potentially be relevant to epithelioid sarcoma. I am a huge supporter of The Creating Hope Act, a national act of congress which sets up a fast-track voucher system to incentivize drug companies to invest in pediatrics. Over the past year, the Creating Hope Act has funneled upwards of $300 million towards pediatric drug development, an enormous achievement when you consider the challenge of doing research on such a small patient population.
You will not find anyone more motivated to cure a childhood cancer than a parent who is facing the potential death of their child. Parents and patient advocates are important, driving factors who are oftentimes instrumental at supporting and driving forward research for young patients with cancer.
I am most interested in reading about ways we as parents of children with cancer and childhood cancer patient advocates can work together with industry, researchers, and clinicians to drive forward more promising treatment options for our children.
Parents of children with rare diseases, especially those with little or no treatments are especially driven to stimulating research and one o the values of this site will be not only to connect those patients but also to promote pooling knowledge and resources. I just met with a father in Vancouver whose has started a network with a very similar mission. I think this would be a great topic for an editorial session and invite you to suggest contributions, either researchers working in this space or patients/families who have a specific focus or disease area with promise for clinical trials.