Posted in #HCSM, Patient Empowerment

5 lessons Inspire learned from its 5 million posts written by patients and caregivers

InspireRecently, Inspire passed a milestone: five million posts written by the patients and caregivers in its  online health community.The  sheer volume of activity in the community—about three New York Times’s—worth of words written around the clock each day—makes it just about impossible to read every word, but we see certain themes stand out.

Here they are:

Patients want doctors to treat them as partners. Patients expect their doctors to listen to them not only about their symptoms, but also about their own perspectives on their condition. To be clear, patients don’t want to play doctor, but many patients—especially those with rare diseases—become highly educated about their condition and have done research which they believe bears consideration. The asymmetry of medical information available to patients versus doctors is almost gone, and today any one of us can go online to learn a great deal about a medical condition.

Patients are less cynical about pharma companies than you’d think. Patients want the medical system to work for them. They want pharma companies to make the drugs that help them and their loved ones. When we started Inspire, we were warned that patients would be overwhelmingly negative about pharma companies. This is simply not what we see. What we do see is a lot of discussion about how to optimize treatment, and a genuine interest among patients to best to benefit from their treatments.

Patients are not online just to vent. In our experience, patients seek three kinds of support: emotional, scientific, and practical. Many patients get scientific support from their physicians and online encyclopedic sources. But they are also hungry for practical information to improve their health, and they gather a lot of this information from their peers online. In two recent Inspire surveys—one of psoriasis patients, and another patients with the rare disease neurofibromatosis—each group said the primary reason they participated in online groups was to research the best available treatments. Emotional support and empathy are important, no doubt. But many patients share crucial practical information that only fellow patients know.

Patient communities aren’t ‘soft.’ The notion that patient-provided information is less important or valuable than physician-provided information is wrong. Different? Yes. Inferior? No. One only needs to spend ten minutes in our ovarian cancer group, for example, to immediately realize there is a great deal of knowledge and benefit being shared among patients 24 hours a day. This is in no way less rigorous or serious than traditionally authoritative sources of information. What is clear to us is this: patients who want to educate themselves about their health seek multiple sources of information, and they are smart enough to weigh those sources appropriately. To suggest patient-to-patient information about treatment options and decision-making is not as good as other kinds of support is patronizing and simply wrong.

Patients are generous. Patients, even some who are gravely ill, give of themselves in online groups in profound ways. It is clear to us that patients want to help one another, and in doing so, many discover they help themselves.

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Posted in E-Patient, Patient Empowerment

Study highlights important role that patients play in determining outcomes

When it comes to health care, patients with the motivation, knowledge, skills and confidence to manage their own health have better health outcomes and incur fewer health care costs.

Those are the findings of a study led by Judith Hibbard, a professor emerita in the Department of Planning, Public Policy and Management at the University of Oregon. Hibbard and co-authors found that patients with the lowest level of “activation”— that is, those most lacking in the skills and confidence to be actively engaged in their health care—had average costs that were from 8 percent to 21 percent higher compared to patients with the highest level of activation. The study was the basis for two papers appearing in the February issue of Health Affairs.

“The study highlights the important role that patients play in determining outcomes,” said Hibbard, who recently appeared as a featured expert on health care reform at a White House health care summit at Stanford University. “We found that patients who were more knowledgeable, skilled and confident about managing their day-to-day health and health care—also called patient activation—had health care costs that were substantially lower than patients who lacked this type of confidence and skill.” Hibbard and her team adjusted for patient differences, such as demographic factors and severity of illnesses. Even among patients with the same chronic illness, they found those who were more “activated” had lower overall health care costs than patients who were less so. An earlier study by the same authors had already established that more activated patients also had better health outcomes.

Using a Patient Activation Measure that assesses beliefs, knowledge and confidence in managing health-related tasks, the researchers found that patient scores on a questionnaire that ranks patient activation showed that patients’ responses in effect predicted their overall care costs—even when adjusted by the severity of patients’ health conditions, age, sex and income. The researchers recommend that health delivery systems consider assessing these patient activation scores and supporting patients to become more engaged in their health and health care, as a way to both improve patient outcomes and lower costs.

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Posted in #BCCEU, #HCSM, Patient Empowerment, Twitter

The Power Of The Tweet!

See on Scoop.itHealth Care Social Media Monitor

I logged on to the #BCCEU twitter timeline to find the following tweet @bcceu – In Aus. Health profs gave no info re Living Well courses. Have now emailed to book attendance. Thanks!!! #breastcance…

Marie Ennis-O’Connor‘s insight:

Confirmation if ever I needed it that social media is changing the face of healthcare and empowering patients.

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