Categories

Tag: Jessie Gruman

Jessie Gruman: Tribute to a Tightrope Walker

Jessie Optimized
When I heard that Jessie Gruman had died, that her powerful voice on behalf of patients had been stilled and gone silent years too soon, I thought of Phillipe Petite, the high-wire artist who famously tread a cable strung between the two World Trade Center buildings back in 1974.

Jessie’s balancing act did not take place on so visible a stage, but her death-defying dance equally amazed those who knew, worked with, respected and loved her.

On the one side, she was persistently pulled down by cancer. There was Hodgkin’s lymphoma in 1973 when she was just 20, setting the stage for repercussions of treatment that would dog her ever after: cervical cancer eight years later; colon cancer in 2004; and a diagnosis of stomach cancer in 2011 that returned after a too-brief hiatus. There was also pericarditis, a dangerous heart condition.

Counterbalancing that burden was the uplift of a woman whose “bouts” with cancer shaped, but never defined her. She was a social psychologist who was an early part of work on the chronic care model; the founder of a policy and research center dedicated to empowering patients in health care and in health; a prolific writer and author of a landmark book on what to do with a diagnosis of serious disease; and for many, a personal inspiration.

On the morning of July 14, Jessie finally fell off the tightrope, as we all must eventually do, dying at home. She was 60 years old.

You can’t really understand the outpouring of affection, appreciation and aching loss Jessie inspired just by browsing her impressive bio. She was sharp and funny, with wry asides directed at any pretension exhibited by allies or adversaries alike.

However, Jessie did far more than dish and dis. She was a superlative builder; of an organization, yes, but more importantly, of a body of work that prompted government policymakers and uncounted health care organizations to pay greater attention to the unmet needs of patients. She also reached out directly to fellow patients to help. In all these activities, she married intellectual rigor and careful attention to evidence – techie trendiness, for example, did not impress her ­– with emotional honesty. Jessie spoke what often goes unspoken, candidly acknowledging how horribly scary and alone it feels to be seriously ill.

As she wrote in her book, AfterShock: What to Do When the Doctor Gives You – or Someone You Love –a Devastating Diagnosis:

Every time I have received bad health news, I have felt like a healthy person who has been accidentally drop-kicked into a foreign country: I don’t know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map and I desperately want to find my way home.

Jessie told one interviewer: “I want people to know how to take care of themselves and pay attention to the urgency of their situation even when their heart is broken.” Later, she repeated that theme in an article for Health Affairs that called for policies to support patients and their families in their time of distress.Continue reading…

Getting the Patient’s POV

One major challenge for the new Patient Centered Outcomes Research Institute (PCORI) is to make good on its stated mission to improve health care by producing evidence “that comes from research guided by patients, caregivers and the broader health care community.”

In order to “guide” that research, patients will offer their time and their experience to serve on various panels alongside scientists and other stakeholders, many of whom have competing agendas. This means that representing the patient perspective in research governance, priority-setting, design, execution and dissemination is not a good task for the shy or the ill-prepared.  Not only do you have to have reflected on your own experience as a patient, but you have to have a good sense of how much you can generalize from that experience. This is, after all, not about you. It is about us – all of us patients.

Sometimes this means gathering information from others who have a similar diagnosis and who have been treated with similar approaches. What was getting chemotherapy for breast cancer like for you?

Sometimes it means learning about how people with different kinds of heart conditions or kinds of cancer experience their diagnoses and treatments or health care in general. What happened when you were discharged from the hospital?

Continue reading…

No Magic Pill to Cure Poor Medication Adherence

You are sick with something-or-other and your doctor writes you a prescription for a medication.  She briefly tells you what it’s for and how to take it.  You go to the pharmacy, pick up the medication, go home and follow the instructions, right?  I mean, how hard could it be?

Pretty hard, it appears.  Between 20 percent to 80 percent of us – differing by disease and drug – don’t seem to be able to do it.

There are, of course, many reasons we aren’t.  Drugs are sometimes too pricey, so we don’t fill the prescription. Or we buy them and then apply our ingenuity to making them last longer by splitting pills and otherwise experimenting with the dosage.

Some drugs have to be taken at specific times or under specific conditions, posing little challenge when you are taking only one.  But it can be devilishly difficult to coordinate the green pill half an hour before breakfast, the yellow ones on an empty stomach four times a day and the orange one with a snack between meals.  It’s complicated; we don’t understand.  We’re busy; we forget. We’re sick; it’s confusing.

Some drugs produce uncomfortable side effects while others set off an allergic reaction. Every single day, we have to decide if the promised outcomes are worth the discomfort.Continue reading…

Why Angry Birds Gets More Play Than Health Apps


I have been musing about why, despite our fascination with gadgets and timesaving devices, so few of us use the apps and tools that have been developed to help us take care of ourselves.

The range of options is staggering – my iPhone coughed up 52 applications for medication reminders just now – but most of us don’t make use of the (often free) high-tech help available to us.  There are hundreds of websites and portals to help us monitor our diets, physical activity and blood sugar, talk to our doctors by e-mail and understand our test results.  Apps can help us watch for drug interactions, unravel our test results, adjust our hearing aids and track our symptoms.  Devices can monitor whether our mom is moving around her house this morning or continuously monitor our vital signs.

Interesting ideas.  Modest pickup.

In an essay published in the May issue of the American Journal of Preventive Medicine supplement “Cyberinfrastructure for Consumer Health,” I make some observations about why this may be so, based on my experience as a person who daily responds to an exciting variety of chronic and acute conditions that ebb and flow in my body.  My remarks are addressed to those who fund and develop devices and Web-based tools to help those of us with chronic conditions better care for ourselves.Continue reading…

Does My Doctor Trust Me (and Does It Matter)?

Source: The Edelman Trust Barometer 2011

Members of the  American public are frequently surveyed about their trust in various professionals.  Doctors and nurses usually wind up near the top of the list, especially when compared to lawyers, hairdressers and politicians.  Trust in professionals is important to us: they possess expertise we lack but need, to solve problems ranging from the serious (illness) to the relatively trivial (appearance).

How much professionals trust us seems irrelevant: our reciprocity is expressed in the form of payment for services rendered or promised, our recommendations to friends and families and repeat appearances.

So I was surprised to read an article in the Annals of Family Medicine describing a new scale to measure doctors’ trust in their patients.  This scale, based on input from focus groups and validation surveys of physicians, was developed for research purposes on the grounds that trust is a “feature of the clinician-patient relationship that resonates with both patients and clinicians.”

Hmmm. I hadn’t really thought about trust being a two-way street in my relationship with the doctors and nurses who take care of me.  But given the push for us patients to become actively engaged in our health care, it’s not surprising that questions would arise about how dependable we are as partners. And it is a sign of the times that as clinicians increasingly face incentives to deliver evidence-based medicine and are held accountable for our health outcomes, our trustworthiness as partners has become professionally, if not economically, important to them.

While this new scale is only a research tool, its creation nevertheless raises interesting questions about how traditional notions of trust in medicine are changing in the new clinician-patient relationships that the media urges us to forge. So let’s examine it as a reflection of the idea of physicians’ trust in their patients.

Here are nine of the 18 items of the trust scale.   Clinicians are asked:Continue reading…

Registration

Forgotten Password?