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Tag: Patient advocates

Reflections on HLTH2021: The Lens of the Patient and Carepartner

By GRACE CORDOVANO

Attending HLTH 2021 in-person in Boston solidified that there is no comparison between attending live vs. virtual conferences.  While content and presentations can be solid both virtually or in-person, it is the energy of the connections that are made between scheduled presentations and the conversations that are shared throughout that move the needle. Kudos to the organizers of HLTH 2021 for prioritizing the safety of all in-person attendees with COVID-19 vaccination requirements, proof of negative PCR testing within 3 days of arrival, and mask requirements on-site.

After reflecting on all the proceedings, the conversations, and the experiences at HLTH 2021, here are eight reflections on the event from the patient and carepartner perspective.

1) Patients and Carepartners (Not) Included

These words were the taglines of HLTH2021:

Dear Future: We’re coming for you. #HLTH2021

The largest and most important conference for health care innovation

A battle cry for improving health care, but I can’t help but wonder, who’s “we’re”?

The agenda and stages at HLTH2021 were filled with some of the biggest, most respected names in the health care ecosystem. Unfortunately, no patients were speaking from these stages. A search of the agenda and speaker list for “patient” showed entries for “patient experience” or “patient” in the form of an executive title. Many panels and discussions fell short of the real-world experiences of living life with a diagnosis or multiple comorbidities, the difficulties of barriers to healthier living that are caused by social determinants of health (SDoH), and disgraceful realities of the inefficiencies of workflows patients and their families face. There were no patient or carepartner champions sharing the positive impact that a company’s brand has had on their or their loved ones’ lives.

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A Letter to Ms. Judy Faulkner & Mr. Tommy Thompson

By GRACE CORDOVANO PhD, BCPA

Being a patient or a carepartner can be a lonely, powerless place.

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 carepartner.

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 burden.

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A Rosa Parks Moment is Coming in Phase 1 Cancer Trials

By DAVID C. NORRIS, MD

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…

Accolade flying flag as patient advocates

I have spent years whining that no one is doing a good job helping people navigate through the maze of health care. And a survey out last week from my old firm Harris paid for by Accolade confirms that people need help. Doctors don’t and can’t do this. 71% of people said they trusted their doctors, but only 16% said their doctors had time to understand their life circumstances. Yet last summer a touted Silicon Valley startup called Better failed to make a go of a service doing just that.

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.

Will “Partnership” Meeting Propel Mass Movement?

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.

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Contemplating Safety While Lying Down

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?

The human imagination has wondrous capacities, especially when fueled by true stories of harm people have experienced due to medical errors.  I read closely the IOM report To Err is Human: Building a Safer Health System ;  I am horrified by the medical errors experienced by Sue Sheridan and impressed by her leadership of Consumers Advancing Patient Safety and  Diane Pinakiewicz’s at the National Patient Safety Foundation to raise awareness about the dangers patients face due to carelessness and lack of system-level controls.

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