The side effects of cancer treatment can become permanent glitches

Patient
September 24, 2013

Sara was treated for multiple myeloma in the mid-90s and had a stem cell transplant seven years ago. When I asked her husband how she was doing, he said, “Pretty well … just the gift of a little edema in one arm and some neuropathy in her feet.”

On one hand you think, “Hey! That’s great! Those little gifts — those side effects — are a small price to pay.”

On the …

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The side effects of cancer treatment can become permanent glitches

Survivorship care after cancer is a shared effort

Patient
September 10, 2013

I wish I had known earlier that survivorship care is neither a do-it-yourself project nor is it something that I can simply hand off to experts. There is no stable set of signs, signals and test protocols that, if followed assiduously — and that come up negative — means I am protected from a recurrence, new cancer or late effects of treatment. Observation, expertise and self-knowledge by both me and …

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Survivorship care after cancer is a shared effort

After cancer treatment, primary care becomes even more important

Patient
August 27, 2013

Having cancer has infected me and many others with the irritating tendency to view any persistent, troubling symptom through the lens of a recurrence or a diagnosis of a new primary cancer. A friend of mine who is nearly five years post-kidney cancer treatment casually remarked the other day that he needed to see a doctor about his sore ankle: it could be arthritis, but it might be cancer, of …

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After cancer treatment, primary care becomes even more important

How fear affects cancer survivorship

Patient
August 20, 2013

A recent Wall Street Journal article about how post-traumatic stress syndrome can be caused by cancer and stroke brought to mind the variety of responses many people experience in response to cancer diagnosis and treatment. The lingering intensity of those responses – physical, psychological, social and behavioral – can affect whether and how we attend to the tasks of survivorship; that is, monitoring and addressing the unique health challenges that follow treatment …

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How fear affects cancer survivorship

More health information is not necessarily better

Patient
August 10, 2013

Have you ever felt that claims about the effects of our access to new and more health information overshoot the mark? For example, you may be searching for help in understanding some ambiguous findings from diagnostic tests. Perhaps you think you are having troubling side effects from your new medication but then it may just be a reaction to something you ate last night. You may be hunting high and …

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More health information is not necessarily better

Patients and clinicians don’t have the same goals in mind

Patient
July 27, 2013

What we look for when we participate actively in our health care differs from what our clinicians, employers and health plans believe will result when we shift from being passive to active participants.

We don’t have the same goals in mind. Does this matter?

Ask patients who use the phrases “patient engagement,” “patient participation” or “patient empowerment” about their goals and we talk about having some measure of control over our health …

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Patients and clinicians don’t have the same goals in mind

Firing your doctor carries emotional weight

Patient
July 10, 2013

Last week, a friend told me that her mother had been fired as a patient by her primary care physician in a letter she received in the mail. “Our philosophies of care are too different,” was the explanation.

Last week, I fired my oncologist by email. “I have transferred my care to ___ ___.” I gave no explanation, although the note was polite and appreciative.

My friend and I spent some time …

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Firing your doctor carries emotional weight

What will health care teams mean for patients?

Patient
June 27, 2013

Have you heard that soon most primary care in the U.S. will be delivered by teams?

Yep. Team-based care is one of the characteristics of the patient-centered medical home, a way of organizing the care of patients that allows primary care clinicians to see more patients in a day while at the same time delivering better care. This move toward team-based care started long before health care reform and was embedded …

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What will health care teams mean for patients?

A voice is missing from discussions of the patient experiences

Patient
June 20, 2013

The demand for patient voices is on the rise as hospitals and dialysis centers, research teams and health care advisory groups face requirements to document our participation in governance and program decisions. And many of us have stepped forward to take on these roles.

Some of us do so as victims of horrific medical errors or uncoordinated care resulting in injury or from disrespectful care that undermines all confidence in health …

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A voice is missing from discussions of the patient experiences

Does patient engagement set patients up for failure?

Patient
June 9, 2013

“Maybe we shouldn’t urge people to engage in their health care: it sets them up for failure and punishment from their clinicians.”

A senior patient advocate and researcher recently made this comment to a gathering of experts in patient engagement.

For a few minutes, I was inclined to agree with her. I thought back over the previous three months: the passive aggressive (and aggressive-aggressive) responses of some of my clinicians to my …

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Does patient engagement set patients up for failure?

Don’t call me a health care consumer

Patient
May 24, 2013

The highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services.  But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service.  Two phrases commonly used to describe us …

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Don’t call me a health care consumer

Twitter for the engaged patient: A curated stream of new evidence

Social media
May 7, 2013

Since 1992, I have advocated for all of us to have the information, support and guidance we need to act to improve our health and get the most from our health care. I believe – and there is considerable evidence to back me up – that we do better when we participate in our care to the extent we are able.

As someone who has been diagnosed with several different types …

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Twitter for the engaged patient: A curated stream of new evidence

What patients want from mobile apps

Tech
April 4, 2013

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Dear mobile health app developers,

We—patients and caregivers—need your help to reduce the demands of self care. Mobile health (mHealth) apps have enormous potential to lessen our burdens. But our needs are often only loosely related to what clinicians and/or the evidence expect us to do. Most mobile app developers have ignored this fact by designing tools that primarily reflect the imperatives of …

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What patients want from mobile apps

Compensating for the lack of progress in EHRs

Patient
February 26, 2013

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My cardiologist recommended I get a stress echocardiogram so he could rule out the cause of some new symptoms. After I had scheduled the test, I realized that some of my other doctors should have a record of this test. But whose scope of concern would include these troubling symptoms? Probably at least three of them: my primary care physician, my survivorship …

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Compensating for the lack of progress in EHRs

Outrage: The crisis in patient safety

Patient
February 5, 2013

Sometimes, angry patients and dissident doctors and nurses warn us about the impending patient revolution – how health care is so unsafe, of such poor quality and so expensive for us patients that we are soon going to rise up out of our beds, go to our windows and, in unison, holler, “I’m mad as hell and I’m not going to take it anymore!”

We’ll riot in the streets, …

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Outrage: The crisis in patient safety

The cost of health care is different from its price

Policy
October 8, 2012

“Health care costs are sky-rocketing!”

“The percentage of the U.S. GDP devoted to heath care costs is the highest in the world.”

“The cost of Medicare is unsustainable.”

For most of us, the cost of health care (i.e., the dollars required by the system to produce and deliver care) isn’t what brings us the most anxiety.

It’s when we’re patients or helping a loved one find care that so many of us are deeply …

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The cost of health care is different from its price

An OpenTable approach to hospital discharge planning

Patient
September 11, 2012

Have you ever sat on your bed after being discharged from a hospital stay and suddenly felt – along with the relief of being home – overwhelmed by what you have just been told that you and your loved ones must now do? Similarly, have you ever walked out of an appointment with your clinician and said, “HUH? Exactly what did we agree I am going to do about this …

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An OpenTable approach to hospital discharge planning

Hospital discharge planning: Involve the patients

Patient
August 15, 2012

“Here is a prescription for pain medication. Don’t drive if you take it. Call your surgeon if you have a temperature or are worried about anything. Go see your doctor in two weeks. Do you want a flu shot? I can give you one before you leave. If you need a wheel chair to take you to the door, I’ll call for one. If not, you can go home. Take care of yourself. You are going to …

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Hospital discharge planning: Involve the patients

Physician disrespect impedes patient safety

Patient
June 12, 2012

“I just love working here!” my nurse told me. “We have great supervision, I have wonderful colleagues – we all help each other in an emergency. The doctors are really responsive and I feel like I am doing important work. I thought I would only stay for a year because oncology is so hard, but I’ve been here ten and I still love it.”

This is what we want to hear …

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Physician disrespect impedes patient safety

Have cancer screening tests been oversold?

Conditions
April 14, 2012

Will we – you and me and our parents and neighbors – be a significant force in quelling the tide of over-testing for the early detection of disease?

When you have had cancer as many times as I have, you become suspicious that there are more cancer cells inside you waiting for some obscure signal to make them leap into action and start multiplying out of control.  So you develop a …

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Have cancer screening tests been oversold?

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