Patients with rare or complex diseases often struggle to find specialists who meet their specific condition and individual needs. But care delays can negatively impact health outcomes, especially in diseases that are progressive in nature, including multiple sclerosis (MS) and other autoimmune disorders, cancer and many rare conditions.
The solution? Meet patients in more impactful ways during their doctor search.
It’s crucial to connect patients with relevant information on symptoms and conditions when they are most in need of answers - before they receive a diagnosis. Doing so can help get someone to the right doctor to make a diagnosis and keep them on the path to effective treatment, explain Katherine Perez, VP Global Patient Advocacy and Policy, and Susan Begelman, MD, Global Head of Medical Affairs, both from argenx.
“In some cases, patients give up entirely when a diagnosis is not made by a primary care doctor after multiple visits. Because remember, not all patients know to ask for a specialist. They just don’t know to ask,” Begelman said.
Once a patient has a diagnosis, supporting them with condition information is critical to their treatment journey. At this stage, many people turn to digital and online content to educate themselves on their condition, hear from other patients and explore care options, says Laura Julian, PhD, Senior Medical Director, MS at Genentech. Based on a national survey Genentech conducted among patients and caregivers, 71% of people among the general public reported that they would not feel prepared if they or a loved one were diagnosed with MS.
To meet the needs of MS patients post-diagnosis, Genentech partners with advocacy groups to provide educational and video content on living with MS, in addition to providing in-language resources for Spanish-speaking MS patients. “These efforts aim to help engage patients with the most relevant resources at the time they need them and encourage those living with MS to seek appropriate care,” Julian said.
And in MS, where progression is responsible for an increase in disability over time, “ensuring early and prompt treatment following diagnosis is of the utmost importance, and connecting with the right specialist and/or care team is an essential part in achieving proper care,” she added.
Digital doctor-finder tools can also help patients with rare and complex diseases find specialist care that’s accessible and meets their unique needs. These tools, which can be integrated into branded or unbranded websites, allow patients to search for specialists based on their expertise, location and the insurance plans they accept. Some even make it easy for patients to schedule appointments with specialists online or find convenient sites to receive prescribed infusions.
Connecting patients to advocacy groups in their condition is another way to help them find quality specialist care, as some advocacy groups feature directories of experienced clinical specialists. “We know from experience that patients who are reached early in their journey can find support from advocacy organizations to get connected to experts in the field and to other patients with similar diagnoses,” Perez said.
But support shouldn’t end there. For many patients, the treatment journey is not linear, meaning even a diagnosed patient may need to continue their doctor search or rely on treatment information from brands if their needs change. And particularly for patients with rare diseases, for whom finding in-person expertise and support can be challenging, digital tools can continue to play a key role in their care search.
“Digital tools and engagement can connect patients to the right care team more quickly, as well as deliver information to support family and caregiver education,” Perez said.