Nirpal Virdee, Synchrogenix’s Global Head of Transparency and Disclosure recently sat down with Trishna Bharadia, award-winning health advocate and patient engagement champion, for a discussion around patient engagement and patient centricity. Their discussion was moderated by Darshan Kulkarni of the podcast ‘Darshan Talks’ for a series of episodes that you can listen to here. Darshan has given us permission to summarize their conversation for this 3-part blog series.
Technology and the Rise of Patient Communities
Technology has undoubtedly helped accelerate the rise of patient advocate communities. Thanks to the internet, patient communities are organized all over the world, bringing people together to share their experiences and address overarching issues and challenges from a patient angle.
“It’s becoming easier to engage with other advocates,” Trishna said. “There is a weighted voice to help us facilitate change, especially in an industry as large as the pharmaceutical industry.”
Although there has been a surge in movement around patient advocacy, are pharma companies treating patients with the respect they deserve or continuing to lump all patients together?
According to Nirpal, we’re not there yet. “There has been progress, of course,” he said. For example, twenty years ago you didn’t see roles like Chief Patient Officer or Global Head of Patient Advocacy. “There is a movement around understanding the need for a coordinated engagement and high-level of leadership that represents that fact that sponsors need some sort of engagement/partnership with patients. But the movement is slow.”
Three Types of Patient Advocates
Trishna agreed that patients are still being lumped together. “Very few pharma companies are recognizing that not all patients and patient advocates are the same,” she said. There is a difference between engaging with patient advocacy groups/associations and engaging with individual patient advocates and the patient community.
According to Trishna, there are three different types of patients within a patient community.
1. Patient by Experience
This represents the majority of patients. Patients by experience are those who are diagnosed with a condition, may or may not be informed of how to live with it on a day to day basis and have knowledge of only their own experience with their condition.
2. Expert Patient
Expert patients are knowledgeable about their own experience with their condition, but also the experiences and issues affecting other patients within that condition community. Expert patients are highly knowledgeable about a disease area and may share information with their peers.
3. Pro Patient
Pro patients are advocates who have looked beyond their own disease area and are highly knowledgeable about not just their disease area, but also the issues that affect across lots of different patient communities, such as health literacy, use of technology within healthcare, patient engagement, and engaging with hard to reach communities.
Pro patients are very informed and well networked with numerous stakeholders. They also may offer a range of skills you wouldn’t typically see with the other groups, such as policy making or clinical trial design, for example.