What Is the Value of Different Patient Perspectives?

Patient advocates play a crucial, if sometimes overlooked, role in advocating for patients and ensuring that pharmaceutical companies consider issues affecting patient communities in their development process. Despite the critical role that patient advocates play, some argue that patient advocates are so enmeshed in the healthcare industry that they carry over implicit biases—ruining their credibility as patients. However, this ignores the value that patient advocates can provide, which may not be possible for the average patient. There are also different roles that patients can fill when advising pharmaceutical companies—while patient advocates offer a more expertise perspective, the average patient’s insight is just as valuable. 

Do Patient Insights Differ?

Pharmaceutical companies often turn to patient advocates to gain insight on how patients are navigating various health policies, however, this may neglect the broader group of patients who lack such expertise. Most patients lack research and patient expertise, and may only be knowledgeable about their own experiences living with their health conditions. Despite being less knowledgeable, this group of patients can still provide value to pharmaceutical companies in the form of showing what daily life is like with their condition. This group of patients can also show what it is like for a “non-expert” to navigate the healthcare industry and try to decipher the information being presented to them. 

Patient advocates make up the more informed sector of the patient population. This group is highly knowledgeable about issues affecting patient communities and the policies that make up the healthcare industry. Although this group of patients is effectively smaller than the former group, they offer valuable insights for designing protocols and increasing patient engagement. 

How Should Companies Engage with Patients?

Life Science companies should ultimately recognize that there are different patients and ensure that they are engaging with the correct group. This means pulling in patient advocates for advice on developing protocols and regulations that may fall beyond the average patient. Patient advocates will have a more thorough understanding of existing healthcare policies and protocols, and will therefore be more valuable to companies looking at these matters. Patient experience could be imminently helpful for investigating how the average patient deals with their conditions daily, however, “patients by experience” may be more helpful to look at. “Patients by Experience” represent the wider demographic of patients and provides life science companies with a good idea of how the average patient understands the information being presented to them.

Takeaways

Companies must learn to identify what type of patients they want to engage with. This means not only going to qualify patient experts but also considering what insights the average patient can offer. By making these distinctions, companies can develop policies that are more inclusive and reach a broader base of patients.

 

If you have any other questions about how to communicate with the FDA or how your past and/or current FDA communications affect you and your business goals, reach out to me on Twitter, LinkedIn, or send me a message here.

I also host a podcast called DarshanTalks, a show that discusses newsworthy FDA issues and how they apply to bringing a product to market – and keeping it there. From patient centricity in clinical trials to the government shutdown to CRISPR and bioethics to why big data is doomed to fail in healthcare, we’ve got quite the list of topics to review! Listen to the podcast on Google Podcasts or on Apple Podcasts.

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The opinions stated in this blog are the sole and present opinions of the blogger and do not necessarily represent the opinions of the Kulkarni Law Firm, PC and/or its attorneys. Such opinion(s) may change over time. Such opinion(s) should not necessarily be attributed to the institution for which these individuals may work or otherwise represent in any capacity. These blogs do not constitute legal advice and should not be construed as such.