Being a patient or a carepartner can be a lonely, powerless
There’s no high powered legal or lobbying team to help support
you in your or your loved one’s health care journey. There’s no PR team at your
beck and call. There’s no advisory board, no executive committee, no
assistants, no chatbots or AI-powered technology coming to the rescue. There’s
no funding or a company sponsoring your efforts.
There’s no course in how to be a professional patient or
There’s no one there in the stillness and dark of the night, when
you are in the quiet of your thoughts, the privacy of your personal space,
where there are fleeting moments that you don’t have to be strong and
courageous. There is no one there to console you, support you as you lay there
willing to make a deal with the devil for the slightest glimmer of hope, the
slightest bit of clarity, or slightest bit of peace.
As a the carepartner to a loved one who is sick or disabled, many wouldn’t second guess charging head first through a thousand wielded swords if it meant a hope or a cure.
As an advocate, the majority of the work you do is self-created,
self-supported, and unpaid. A calling. An undeniable, magnetic force that pulls
you in because you cannot turn a blind eye no matter how hard you try. Because
you cannot bear witness to human suffering and not do anything. Because you’ve
been there and you can relate to another’s pain, grief, and sense of
hopelessness and it is unacceptable to not help ease the heaviness of another’s
I want to tell you about the most exciting discovery I’ve made in 2+ years of research on dose individualization methods for phase 1 cancer trials. This discovery has nothing to do with any of the technical problems I’ve confronted and solved along the way. It involves no gigantic equation, no table of simulations results, and no colorful plot. Rather, it’s a discovery about sources of power to innovate in drug development.
In general, how would you describe the balance of power between Big Pharma and the individual patient? The question seems ludicrous—maybe even offensive—in light of ongoing scandals with price-hikes and shortages for critical drugs. But in the special area of trial methodology, I’ve got a real surprise for you…
One result from my DTAT research has been a clear demonstration that 1-size-fits-all dose finding in phase 1 cancer trials can cut the value of a drug in half, or even drop it to zero by setting the drug up for failure in phase 2 or 3. Although this economic argument has never been made quite so explicit and rigorous, I am certain the underlying principle comes as no surprise to anyone. (I note hardly anyone bats an eye when I detail the math.) Continue reading…
Somehow Accolade seems to be threading this needle. They’ve raised more than $125m (including another $30m late last year beyond what I discuss in this interview). While they’re helping patients they’re charging their employers and insurers for the service. Late last summer I met Accolade’s EVP Amy Loftus. In this interview she explains what they do, and how it works.
Is participatory medicine poised to become a mass movement? A weekend gathering of patient activists and supporters at a “Partnership with Patients” conference this past weekend offered some important clues about opportunities and obstacles.
The meeting was conceived and created in a matter of weeks by artist and activist Regina Holiday, with a little help from a lot of friends and an offer of a casino-turned-corporate-meeting-center by Cerner Corp. in Kansas City. But this meeting was unusual for reasons other than location. It was not patients protesting the high cost of care or barriers to access or the slow progress of research into their disease. Instead, they were trying to transform the way doctors and others throughout the health care system relate to every patient with every disease.
What was even more unusual, perhaps even unique in the history of medicine, is that they were joined in partnership by health care professionals – doctors, nurses, information technology specialists, medical communicators and others. The focus was on constructing something new, not just complaining about the old.
I write about what it takes for us — whether we are sick or well — to find and make good use of health care today.
At the end of September I was hospitalized for surgery to remove a tumor in my stomach. Below is one in a series of five observations about my experiences since then.
“You have to get out of this hospital – it’s a dangerous place,” each of my physician friends exclaimed when they came to visit me during my recent stay after surgery for stomach cancer.
Jeez! I know! Prior to my operation, I was more preoccupied by the possibility of medical errors than of the operation itself or the pain it might cause. What if they take out my kidney instead of my stomach? Or leave a sponge in there? Or over-hydrate me so I drown? What if one of my many overnight vitals-taking-shot-givers infects me with MRSA?