Can you hear the patients’ voices?
| Feb 23, 2016
The patient empowerment movement is talked about almost constantly in our industry. The movement makes patients an equal partner in dealing with their health conditions and treatments and enabling them to successfully navigate relationships with physicians, insurers, pharmacists and others in the healthcare system they interact with.
One way patients can become more empowered is through the help of disease advocacy and support groups that provide educational materials, financial information, group therapy, and other services. Susan G. Komen’s efforts in breast cancer have been so successful that every October is awash in pink, from yogurt containers to professional sporting events. These groups have been hugely successful in making their members’ voices heard.
But what happens when you have what is considered a rare disease? Rare diseases are generally defined as conditions that affect a small number of a country’s population. Are their voices being heard by the healthcare community?
It turns out that rare disease patients exemplify the idea of patient empowerment. These patients (and their caregivers) have to make themselves experts in their condition due to fewer medical professionals having experience in a particular disease and a general lack of available information. Therefore, rare disease patients and caregivers develop expertise on their treatment and care, making them an integral member of their care team.
As critical decision makers, rare disease patients are more engaged with their physicians. According to Kantar Health’s National Health and Wellness Survey (NHWS), 69% of rare disease patients feel their doctor is very attentive to their needs and concerns (vs. 62% of the general population). They’re also more likely to keep their physician in the loop regarding the over-the-counter medications they use (73% vs. 61%), and to consult with a medical professional when they don’t feel well (45% vs. 34%).
However, these patients’ diseases are taking a toll on their day-to-day lives. Over half of rare disease patients say they feel tired all or most of the time, compared with a fourth of people without rare diseases. Their energy levels are lower, and they feel worn out more often. Despite this, over half say they’re happy all or most of the time.
While rare disease patients are doing a great job advocating for themselves, it’s important we in the healthcare industry help amplify their voices. Bringing more attention to these low-prevalence conditions will shine a light on the need for more research and development of new treatments and will help patients improve their lives.
Rare Disease Day 2016 is being observed next Monday, February 29 (the rarest day of all). Visit the Rare Disease Day website to find out how you can get involved, or download our infographic to learn more about patients’ attitudes. Join us in making the voice of rare diseases heard, and helping them lead the way in patient empowerment.