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Study from Pew Internet Project Supports Rare Disease Insights

Posted by | 1:15am on Monday, February 28, 2011
stained glass ceiling

the internet gives patients and caregivers access not only to information, but also to each other 

The Pew Internet Project and the California HealthCare Foundation today release a new report, “Peer-to-peer Healthcare.” It includes insights from an online survey of 2,156 members of the National Organization for Rare Disorders (NORD), which show the depth and breadth of what is made possible when patients and caregivers connect with each other online.

The research supports what we’ve found through our work in rare diseases: the internet gives patients and caregivers access not only to information, but also to each other. This report shows how people’s networks are expanding to include online peers; especially for those with a rare disease. Health professionals remain the central source of information for most Americans, but “peer‐to‐peer healthcare” is a significant supplement.

People Like Me
When asked about the last time they had a health issue and where they looked for information, people living with a rare disease far outpaced all other groups in turning to their peer network. More than half of rare‐disease respondents say they turned to family and friends. Another majority say they turned to others who have the same health condition. It’s important to note that health professionals were still the most popular choice even among this highly‐networked group.

“Rare-disease patients’ dispatches from the edge of medicine show an intensified form of networking among patients and caregivers,” says Susannah Fox, associate director of the Pew Internet Project and author of the report. “They search, they network, and, most importantly, they rely on our doctors as guides.”

The Social Life of Health Info
As the report notes, people living with a rare disease – their own or a loved one’s – have taken the social life of health information to the next level. While it often starts with the journey to diagnosis, the journey continues with exploring treatments and learning how to live with the disease. As the report thoughtfully states: “What was once a solitary expedition for one person or one family, however, has become a collective.”

Since most people with a rare disease will never meet another person in real life with that same rare disease, they seek a connection online. The study quotes Siren’s book about rare disease caregivers, Uncommon Challenges; Shared Journeys, and highlights a quote from Jordana Holovach: “Before the internet, we were alone. In 1996, when Jacob was born, there was no search engine to offer me any information. Today, because of social media, we are connected with many people who are fighting the same fight as we are. The internet has made our small disease larger and we are able to educate many more people now.”

Drivers of Diagnosis and Treatment
People living with rare conditions often struggle over many years to arrive at a diagnosis. The combination of information and support offered via the internet is powerful. However, a diagnosis is just another starting point for most people, especially if there is no treatment for the disease. There is no way physicians can stay up to date on the medical literature and new treatments. Patients and caregivers, however, are incentivized and motivated to learn everything they can about their rare conditions. Often, the relationship between these empowered patients and their physicians is a true partnership.  The report notes that “Health professionals retain their role as experts in a certain field or condition, but in these disease communities, each person is an expert in observing the effects of a disease or a treatment on their own or a loved one’s body or mind.”

Education and Support Online
By its very nature, a rare disease necessitates online consultation. In many cases, physicians will have never treated a rare disease before and the closest patient may be many miles away.

As part of the online survey, respondents wrote short essays about their use of the internet. A woman who cares for her husband describes how she relies on both groups to navigate to the information she needs: “We have found that we get helpful info from both doctors and other patients/caregivers. Other patients/caregivers are almost more helpful when it comes to this disease because as a group they have more info than any one individual doctor has. We have gotten info from other patients/caregivers that we’ve then told the oncologist about so he could look into it. Sometimes we feel like we’re educating our doctor more than he is educating us.”

One mother caring for a child with a rare condition wrote, “In my experience of dealing with a rare, serious, and chronic disorder, specialist doctors are typically the ‘go to’ people for medical advice involving medication or surgery … Sometimes the doctors have not been as knowledgeable about the feeding issues which are of great importance. Sometimes other parents have some really good advice in these areas.” She qualifies that statement, however, noting the seriousness of the situation she and other people face: “We patients and caregivers of patients have to be very careful not to generalize from our experiences. Sharing information about experiences with medications and symptom is very helpful as long as extrapolations are not made.”

Overall, this important survey by Pew reinforces one of the themes of today’s Rare Disease Day: Alone we are Rare. Together we are Strong.

(Image courtesy of LJ Gervasoni on Flickr.)

About Wendy White

Since founding Siren Interactive in 1999, Wendy has been recognized as a thought leader at the intersection of niche pharma brands, patient empowerment and online marketing. Her vision for how the internet can facilitate interactions and provide crucial information that patients, caregivers and their healthcare providers previously struggled to find has propelled Siren to the forefront of relationship marketing for rare disorder therapies.

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