Community, Coping, News & Research

Patients’ Information-Gathering & Decision-Making

Yesterday the New York Times published two articles about the information and resources patients seek as they make significant health care decisions. I’ve written summaries of both articles. You can read the first article without registering at the New York Times if you use the link below, but registration is required to view the second article.

The first article, Awash in Information, Patients Face a Lonely, Uncertain Road, describes the informational feast or famine that so many patients experience. Many feel they are not getting enough information or support from their doctors, but, when they turn to the internet, the answers range from helpful to confusing to simply wrong.

Furthermore, patients are also often responsible for “coordinating doctors, medical records and procedures, as well as negotiating with insurance companies, who are often the ultimate arbiters over which treatment options will be covered.”

Long-term, supportive relationships with primary care doctors are difficult to maintain with insurance changes, moves and rushed visits. Doctors, as well as patients, miss these relationships and are upset that the medical climate demands them.

Patients Turn to Advocates, Support Groups and E-Mail, Too, is the second article that appeared in yesterday’s New York Times. It explores the relationships that patients have built among themselves to support and teach one another. Some of these groups are formal and supported by topic-specific education organizations, like ACHE. Others are more grassroots, like blogs and online forums.

Other forms of information gathering include patient advocates and e-mail. Many hospitals have advocates on staff to resolve disputes and help patients with difficult decisions. Patients can also seek advocates from nonprofit groups or to hire. E-mail between doctor and patient is highlighted as less helpful than it seems because of confidentiality and uncertain response times.

The article concludes, “Lonely, overwhelmed patients seem to hunger for these [supportive] conversations as much as doctors do. Patients are proud to be independent-minded consumers, said Debra Roter, a medical sociologist at the Johns Hopkins Bloomberg School of Public Health, but they also value the guidance of a caring doctor.”

Community, Coping, Reader Stories

Headache Forums

If you’re looking for a way to remember that you’re not alone and that it’s possible to find a way to deal with your pain, online forums are a great place to go. Even if you don’t you want to post, you can learn a lot from reading. Topics range from personal stories to drug side effects to treatment options. Some posts are rants about being miserable and others celebrate victories like positive test results or a new medication that gives relief.

There are four active forums that I know of and, even if the title includes “migraine,” they all address various types of headaches. Some focus on exchanging clinical information while others are more about creating relationships. Don’t be embarrassed to read without posting, to only write occasionally or to vent. All the forums are different, but they’re all made up of caring people who understand your frustrations.