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.
So far in our Patient Engagement series, we have defined and explained the difference between Patient Engagement and Patient Centricity and examined the three different types of Patient Advocates. Now we are going to explore the question of bias and why it is so important to engage with the right patient advocates at the right time.
How to Engage with Patient Advocates
Nirpal raised the concern of bias when he asked Trishna, “as you engage more and more with folks who have become so expert, do you risk introducing bias and losing sight of the large, core group of people trying to live with a condition?”
Trishna agreed there is the risk of bias, but that reiterates why it is so important that industry understands what the different patient advocacy groups bring to the table. “Unless industry recognizes that there are different types of patients suitable for different purposes, they’re not going to be engaging with the correct group,” she said. “Different groups have different value. It’s about bringing each of the patient groups in at the appropriate time for the appropriate purposes.”
“That’s the point,” Nirpal agreed, “engaging with the correct groups.”In Nirpal’s experience, pharma companies are very comfortable working with advocacy groups because they find it easier. But he sees the same model applied to every use case. “That can’t be right,” he said. “In those scenarios where you are putting together information where you need to get a perspective of whether something makes sense to a patient, you need to engage with a different group.”
Different types of patients will be required for different use cases, like protocol design, for example. This is an area where it helps if a patient group understands industry and what may or may not be possible in terms of regulations. “If not, they may become frustrated and you won’t be able to get the kind of advice and insight you need to make the engagement successful,” Trishna said.
Trishna added that It is also important to keep in mind that although advocacy groups and patient associations do represent the broad patient community, by virtue of being an organization they have their own governance and agendas that may or may not conflict with a particular engagement piece.
Patient Engagement with Podium
All these things need to be taken in to account when engaging with patients, which is why it is so important to recognize the different types of patient advocates and engage with them appropriately.
This is at the core of what Synchrogenix is trying to achieve with Podium, a platform where sponsors can engage with specific patient groups throughout the clinical trial process in a secure manner. “We want to utilize different groups more effectively within research,” Nirpal said. “We also want to get a broader voice in order to get that weighted voice. Sponsors can pretend that they have all patients represented, but they probably have less than 1% of the entire population of a disease.”
Using Podium, Synchrogenix is establishing that broader collective and working with patients earlier around study design and protocols to get their perspective before trials are put together. This is how we can ensure that we are facilitating the need of the patient.