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Patient-Centered Outcomes Research: Will Patients Be Involved?

December 5th, 2010 by DavedeBronkart in Better Health Network, Health Policy, Health Tips, News, Opinion, Research

Tags: Clinical Studies, comparative effectiveness research, Dave deBronkart, Dr. Pauline Chen, Dr. Wu, e-Patient Dave, e-Patients.net, Empowered Patients, Gangadhar Sulkunte, Healthcare Reform Bill, Healthcare Transparency, Listening To Patients, New York Times, Participating in Medical Research, Participatory Medicine, Patient Empowerment, Patient Participation, Patient Perspective, Patient-Centered Care, Patient-Centered Outcomes, Patient-Centered Outcomes Research Institute, Patient-Reported Outcomes, Transparency In Medicine

A year ago Gangadhar Sulkunte shared his story here about how he and his wife became e-patients of necessity, and succeeded, resolving a significant issue through empowered, engaged research. As today’s guest post shows, he’s now actively engaged in thinking about healthcare at the level of national policy, as well – and he calls for all patients to speak up about this new issue. – Dave

I recently came across a Pauline Chen piece in the New York Times, “Listening to Patients Living With Illness.” It refers to a paper by Dr. Wu et al, “Adding The Patient Perspective To Comparative Effectiveness Research.” According to the paper and the NY Times article, Dr. Wu and his co-authors propose:

1. Making patient-reported outcomes a more routine part of clinical studies and practice and administrative data collection.
2. In some cases requiring the information for reimbursement.

Patient-Centered Outcomes is outcomes from medical care that are important to patients. The medical community/research focuses on the standard metrics related to survival and physiological outcomes (how well is the part of the body being treated?). In the patient-centered outcomes research, they will also focus on outcomes important to patients such as quality of life. In other words, the care experience will be viewed through the eyes of the patients and their support groups to ensure that their concerns are also addressed. Read more »

*This blog post was originally published at e-Patients.net*

5 Reasons Why Patients Don’t Mention Symptoms To Their Doctors

December 4th, 2010 by Elaine Schattner, M.D. in Better Health Network, Health Tips, Opinion, True Stories

Tags: A "Good" or "Strong" Patient, Breast Cancer, Chronic Illness, Dismissing Symptoms, Doctor-Patient Communication, Dr. Elaine Schattner, Empowered Patient, General Medicine, Medical Lessons, Minimizing Symptoms, New England Journal of Medicine, Oncology, Patient Empowerment, Patient-Doctor Relationship, Patient's Internal Conflict of Interest, Patients Who Don't Mention Symptoms, Patients Who Think They're Complaining, Patients' Apathy, Patients' Guilt, Patients' Worry, Respect for the Doctor, Serious Illness, Telling Your Doctor About Symptoms, Thinking Symptoms Aren't Worth Mentioning, Treatable Symptoms, Under-reported Symptoms

To com­plain or “be good” is an appar­ent dilemma for some patients with seri­ous illness.

Yes­ter­day I received an email from a close friend with advanced breast can­cer. She’s got a lot of symp­toms: Her fatigue is so over­whelm­ing she can’t do more than one activ­ity each day. Yes­ter­day, for exam­ple, she stayed home all day and did noth­ing because she was sup­posed to watch a hockey game in the evening with her teenage son and other fam­ily mem­bers. Her voice is weak, so much it’s hard to talk on the phone. She has dif­fi­culty writ­ing, in the man­ual sense — mean­ing she can’t quite use her right arm and hand properly.

“It’s some­thing I would never men­tion to the doc­tor because it is very sub­tle,” she wrote. “But it has not improved and if any­thing has wors­ened over time.”

There are more than a few pos­si­ble med­ical expla­na­tions for why a per­son who’s receiv­ing breast can­cer ther­apy might not be able to use her right arm. But that’s not the point of today’s les­son. What’s note­wor­thy here is that the patient — an edu­cated, thought­ful woman who’s in what should be the mid­dle of her life and is try­ing as best she can to sur­vive — doesn’t think these symp­toms are worth mentioning. Read more »

*This blog post was originally published at Medical Lessons*

A New Superbug?

December 4th, 2010 by Glenn Laffel, M.D., Ph.D. in Better Health Network, Health Tips, News, Research

Tags: Antibiotic Resistance, Antibiotic-Resistant Bacteria, Antibiotic-Resistant Gene, Arjun Srinivasan, Cardiff University, CDC, Centers For Disease Control and Prevention, Contaminated Medical Equipment, Dr. Glenn Laffel, E. Coli, Epidemiology, Genetics, Global Health, India, Infectious Disease, International Health, Medical Tourism, Medical Tourists, Medical Treatment Abroad, Microbiology, NDM-1, Pakistan, Pizaazz, Plasmids, Poor Santitation, Public Health, South Asia, Superbug, Timothy Walsh, Washington Post

Scientists have discovered a new, highly-transmissible gene that could, quite easily in fact, open a frightening new front in the ongoing global war against superbugs.

The antibiotic-resistant gene, NDM-1, was first identified in 2008 a Swedish patient that had received hospital care in New Delhi. NDM-1 produces an enzyme that allows bacteria to destroy most antibiotics. It exists on plasmids, which are pieces of genetic material that are easily shared between bacteria including E coli and other species that can cause pneumonia, urinary tract infections, and blood stream infections.

NDM-1 probably evolved in parts of India where poor sanitation and overutilization of antibiotics provide a perfect environment for the creation of antibiotic-resistant bacteria.

The gene has been identified in three U.S. patients. All had received medical treatment in India, and all recovered from their infections. It has been found sporadically in Britain, Australia and nearly a dozen other countries as well. Most affected patients were “medical tourists” — that is, people seeking less expensive medical care in India.

“We need to be vigilant about this,” said Arjun Srinivasan, an epidemiologist at the CDC told the Washington Post. “This should not be a call to panic, but it should be a call to action. There are effective strategies we can take that will prevent the spread of these organisms.” Read more »

*This blog post was originally published at Pizaazz*

Changing Patient Behavior: Two Power Words

December 3rd, 2010 by StevenWilkinsMPH in Better Health Network, Health Tips, Opinion, Research

Tags: Changing Patient Behavior, Doctor-Patient Communication, Empowering Patients, Family Medicine, General Medicine, Mind The Gap, Patient Empowerment, Patient-Centered Care, Physician Recommendations, Physician-Centric Directives, Preventive Health, Preventive Medicine, Primary Care, Screening Tests, Shared Decision-Making, Steven Wilkins MPH, U.S. Preventive Services Task Force, USPSTF

“I recommend.” These are two word which, when spoken by a physician to a patient have tremendous power to change behavior. That assumes of course a trusting relationship between patient and physician (but that’s a topic for another day.)
 
Take the colonoscopy. The U.S. Preventive Services Task Force (USPSTF) recommends that adults aged ≥50 years get a colonoscopy every 10 years. In 2005, 50 percent of adults aged ≥50 years in the U.S. had been screened according to these recommendations. Not surprisingly, the rate of colonoscopy screening is much lower than that of other recommended adult preventive services. I was curious: Why?
 
Here are two interesting facts:

1. Studies show that patients cite “physician recommendation” as the most important motivator of colorectal screening. In one study, 75 to 90 percent of patients who had not had a colonoscopy, said that their doctor’s recommendation would motivate them to undergo screening.

2. In that same study, in 50 percent of patients where a colonoscopy was appropriate but not done, the reason given was that the physician simply did not “bring up” the subject during the visit. Reasons included lack of time, visit was for acute problem, patient had previously declined or forget. Read more »

*This blog post was originally published at Mind The Gap*

Oocyte Preservation (Egg Freezing): Readily Available, Yet Still Experimental

December 1st, 2010 by Peggy Polaneczky, M.D. in Better Health Network, Health Tips, News, Opinion, Research

Tags: Assisted Reproductive Technology, Chromosomal Abnormalities, Dr. Peggy Polaneczky, Egg Freezing, Embryo Cryopreservation, Fertility and Sterility, Fertility Clinics, OB/GYN, Obstetrics And Gynecology, Oocyte Cryopreservation, Pregnancy and Childbirth, Reproductive Health, TBTAM, The Blog That Ate Manhattan, Women's Health

Oocyte preservation, or egg freezing as it’s popularly called, is now being offered by over half of U.S. fertility clinics, and half of those not offering it now plan to do so in the future. This according to a national survey conducted in mid 2009 and reported this week in Fertility and Sterility.

Over two-thirds of the 143 centers offering oocyte cryopreservation will do it electively, as opposed to those that offer it only to women undergoing cancer treatments that threaten their natural fertility.

Go West, But Be Prepared To Pay

Centers located in the Western part of the U.S. are more likely to offer elective egg freezing than those in the East. Not surprisingly, centers that only accept out of pocket (as opposed to insurance) payments were more likely to offer the procedure, reflecting the history of infertility advancement, which, unlike almost any other area of medicine, has largely been financed by private individual dollars. Read more »

*This blog post was originally published at tbtam*