Learning patient language

The Journal of Medical Internet Research published a fascinating article on using data mining software to analyze patient and consumer health vocabulary. The resulting data can be used to create consumer health education materials. It's a great example of using technology to improve health communication, by creating materials customized to and readable by the intended patients.

When a physician is not a physician

The New York Times Well blog is running a series of articles from cancer researcher Dr. Peter Bach. But Dr. Bach is not offering his perspective as a physician or as a researcher, but as the husband of a wife facing breast cancer. It is a unique perspective: objective clinical knowledge and the raw emotion of seeing a loved one in poor health.

This week, Dr. Bach discusses the complexities and emotions of involvement in a clinical trial. It is one thing to objectively understand the reasons for a double-blind study, where a new treatment is compared to standard care. It is another to be the loved one of a patient hoping that your loved one gets the new drug and that it might be just a little better than the standard care. The article, and other that have explored why patients participate in clinical trials, demonstrates that it is perhaps impossible to be totally objective when discussing cancer research. Patients and physicians will always hope that they will be the exception.

Physician and patient perspectives

The Wall Street Journal Health blog highlights two recently published surveys that point to the different perspective of physicians and patients. The differences highlight how different perspectives can affect the quality of communication between physicians and patients. A little perspective-taking, or thinking from the other person's view, can go along way in facilitating communication.

The value of patient stories

The New York Times Health section had a compelling article today about the value of patient stories and memoirs. Their value may not be in their literary style, many may in fact be lacking literacy polish. The true value of these stories may be the stories themselves. There is therapeutic value to the story, both for the reader and the writer. They inform us of the human condition, the very real emotional pain that goes into illness, and perhaps remind us of the need for empathy toward each other.

Picturing life after cancer

The New York Times is working on a compelling project to collect stories and pictures of cancer patients. Cancer survivors are encouraged to "picture life after cancer" by submitting photos and thoughts about what life means after cancer. You can see the first of the submissions here.

When a physician becomes the patient

I want to direct readers to the latest article in the New York Times "Months to Live" series. The article features Dr. Desiree Pardi, a palliative care doctor, who when faced with the end of her own life, decided to defy the usual advice she gives patients and fight the cancer until the end. The article explores the complexities of physicians' advice and how things change when the physician becomes a patient. I definitely recommend reading and contemplating.

Listening to private calls to gain insight in therapy

The New York Times Cases article this week examined how therapists sometimes get an unintended look inside the patient's life, by the phone calls they take. Therapists now find themselves able to gain insight beyond what is said in session, by how patients react to cell phone calls from children, spouses and others.

But I can't help but feel a little odd about this. I know the patient shouldn't expect privacy if they take a call in front of his or her therapist. But is it OK to put those conversations on the analytical table? Should the patient retain some control of what the therapist and patient talk about or should the therapist be free to bring up something that is observed? Maybe they do this already and cell phone calls are just another observation.

This is just one example of how technology is changing clinician-patient communication. What are others?

Patients finding support on social networking sites

The New York Times had an article today about a new Pew Center for Internet and American Life survey about how patients with chronic illnesses are finding new ways to cope online through social networks. Patients who once felt isolated now have a forum for sharing questions, hopes and ideas for coping with the particular complications of an illness. Fellow patients are able to relate to each other, in a way that their physicians may not be able to, simply because they physicians have never experienced actually living with an illness. Patients describe being in a neighborhood or a member of a community. Now even people with rare illness can have a support group, though they may never meet in person.

You can check the survey and data out here.

Different priorities

The New York Times had an article this week about a paper in the Journal of General Internal Medicine examining what is sometimes a great disparity between physicians and patients: medical priorities. Physicians and patients often have different priorities for medical encounters, as well as different priorities for care of chronic conditions. The article is concrete evidence of the many anecdotes of failed patient-physician encounters. Physicians are failing to communicate with patients about the broader implications of symptoms and illnesses. Patients are failing to communicate their concerns and the reasons for their concerns. There is no easy answer to this dilemma, other than increased listening. But we all know, that is no simple task - for doctors or for patients.

Giving as an act of healing

The New York Times Well blog reviewed a book that explores the health rewards of giving to others. Giving to others isn't a medical cure for anything, but is presented as a means of helping patients cope and gives them hope. The book and the article cite some of the science and questions behind the idea of giving as a means of healing. But in this case, the science isn't as compelling as the stories of patients who have gained from giving to others. And we will all do well in this season to remember that the joy of giving is a joy unto itself, regardless of the benefits.

The Cancer Lounge

The New York Times had a compelling article last week about the cancer recreation lounge at Memorial Sloan-Kettering Cancer Center in Manhattan. The lounge is a place for patient to both forget about their cancer and talk about their cancer freely with other patients who understand. It is a compellling read about the waiting involved in cancer treatment and the simple joy a card game can bring.

The importance of a name

The New York Times had an article today about the intangible importance of having a name for a disorder and how patients claim ownership of that name. The issue is being raised by a group of patients unhappy that the term Asperger's Syndrome will be removed from fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. Asperger's Symdrome is a mild form of autism, in which children and adults often are socially awkward but many are verbal prodigies and highly skilled in specific expertise. But inconsistent diagnosis and a move to depict mental illnesses as falling on a spectrum rather than "they-have-it-or-they-don't" mentality have lead the editors of the D.S.M.-V to place what is known as Asperger's on the autism spectrum. But patient advocates are concerned that losing the well-known and well-accepted term will make others reluctant to seek treatment if they exhibit mild autism spectrum symptoms.

The American Psychiatric Association is expected to post a draft of the new terms and diagnostic criteria and solicit feedback from the community. There will likely be a lot of it, and the feedback will give the authors insight into how patients see themselves and their community.

Cancer and Halloween

I don't have much to add to this. Dana Jennings, a reporter for The New York Times, has chronicled his life with prostate cancer for the NYT Well blog. This week, he wrote about Halloween and the ghosts of cancer. You can find his eloquent post here.

Being a doctor and a patient

As part of their ongoing series on the 40 year war on cancer, The New York Times did a profile on the M.D. Anderson Cancer Center in Houston, Texas. Among the stories were the unique perspectives of both a nurse and a physician who faced a cancer diagnosis and treatment in the place where they have cared for so many patients.

The article touched on how being a patient might affect a physician's perspective:

“A common question people would ask is ‘Are you a better doctor since
you’ve been sick?’ ” Dr. [Martin] Raber said. “My first answer is that I
thought I was a good doctor before. I was worried about being a worse doctor.
Having lived through these biopsies and all these tests, would I be hesitant to
order all these things patients need because I had experienced them and knew
they were not pleasant?

“Then I realized I am not better, but I am a different doctor,” he said. “I
talk to patients differently. I understand more of what their situation might
be.

“My life was very different than it was before that day in the CT scanner,”
Dr. Raber said. “It’s not the life I thought I would have. But my life is still
really good."

A firsthand account of H1N1

Well if he was looking for an angle to tell the story, he now has it. CNN's well known medical correspondent Dr. Sanjay Gupta is now able to report on the H1N1 flu from the perspective of a patient. Dr. Gupta contracted the virus in Afghanistan and wrote about his experience as a physician/patient in his blog. Personal experiences color our communication with others. It will be interesting to see how the experiences of high-profile patients like Dr. Gupta will influence communication about H1n1.

Doctors working with spiritual healers

The New York Times had an article last weekend about a new program in a California hospital where Hmong Shaman are encouraged to visit patients and perform healing ceremonies in the hospital. The program is an example of how effective communication can foster understanding between patient and physicians, and also between cultures. Both the spiritual healers and the physicians have learned from about what the other does and why. Welcoming the Shamans has also helped to build a more trusting relationship between the Hmong community and Western medical practitioners. The Hmong patients, and the communities they come from, may be better able to trust and communicate with their physicians when their religious beliefs are upheld in the process.

The lasting trauma of having a child in the NICU

I wanted to be sure and highlight The New York Times article today discussing the long-term potential trauma associated with having a child in the neonatal intensive care unit. These are the kind of underlying issues that physicians and nurses need to be aware of when speaking with patients and parents about treatment and health care decisions. Communication is not just about the current conversation, but all the previous conversations and experiences that color our perspective. And having a child in the NICU can make a lifelong impression.

Experiencing a patient's perspective firsthand

The New York Times featured an article today about an innovative geriatric education program, in which medical students have the opportunity to experience life in a nursing home. Medical students at the University of New England are given a diagnosis that an elderly patient might have and spend two weeks living as a patient with that diagnosis, including medical exams, being assisted in and out of bed, and passing the time with other nursing home residents. The goal of the program is that the two week experience better equips future geriatric doctors to interact with and understand their elderly patients. When clinicians can empathize with their patient's situation and actions, they will be better able to communicate with their patients about their medical and quality of life needs.

The comfort of routines

New York Times editor Dana Jennings has been documenting his struggles with cancer and cancer treatment in the NYT Health section. Today he discusses perhaps one of the toughest questions after treatment ends: What's next? Rigorous treatment builds a routine for cancer patients, make them feel as if they are doing something to face the cancer. Cancer treatment also introduces the patient to a community of other patients also receiving treatment. But after active treatment ends, the patient may not be done with cancer, but loses the comfort of a routine and knowing what to do about it.

It is a compelling reminder that facing cancer does not end in the treatment room.

Social support during illness and social media

CNN had an interesting story this week about the importance of social support when facing an illness and the role social media can play in creating a place for that support. Web sites and social networking sites can give patients and families a chance to share their stories and hear about the stories of others. Dr. Charles Raison, an assistant professor of psychiatry and behavioral sciences at Emory University School of Medicine and CNNhealth.com's mental health expert said in the story "The jury is still out a little bit on whether social support helps you survive -- but it definitely helps you live better."