While there is a significant crossover between patients and patient advocacy groups, one might see Patient advocates from a special lens because they often have a broader perspective of issues facing the patient community at large. We may contrast this with the average patient who may only be knowledgeable about their own health condition.  As a result, the patient advocate may view the healthcare industry differently than the average patient, and can therefore offer a more cohesive perspective to life science companies regarding their patient engagement strategies.

Three Types of Patients

1) The Patient As Their Own Expert

We can describe this first category of patients as having knowledge solely based on his or her own experience living with a health condition.  This category of patient has knowledge by personal experience and may be informed enough to manage their condition daily but lacks knowledge beyond that.

2) The Expert Patient

We can describe the second category of patients as an “expert patient.” The expert patient is not only knowledgeable about his or her own experience living with the condition, but also knows about the experiences and issues affecting other patients with their condition.  This group of patients may share information with their peers, and engage in dialogue centered around their condition.

3) Patient Advocates

We can categorize the third group as a patient advocate.  This group of patients have looked beyond their disease area and are highly knowledgeable about issues affecting other patient communities.  The patient advocate is well-informed about the challenges facing patients at large including lack of health literacy, use of technology within healthcare, and patient engagement with difficult-to-reach patient communities.  Patients who engage with the healthcare industry to this degree may even have knowledge about policy making and clinical trial design–making them highly informed about the overall structure of the healthcare industry.

Do Patient Advocates Lose Credibility?

One of the potential issues facing patient advocates who are campaigning for policies to protect patients is becoming part of the healthcare industry.  It may seem, to an outsider’s perspective, that a patient advocate becomes so enmeshed with the industry that they lose their credibility as patients. Patient advocates assert that while this is a potential concern, it does not appear to be legitimate.  This is because patient advocates can provide unique insights to pharmaceutical companies regarding issues affecting the patient community.  The patient advocate can provide these companies with new information about issues affecting the patient—and not just the patient sharing their disease area.

Conclusion

Patient advocates play a crucial role in the pharmaceutical industry by offering companies their unique insights into patient engagement and relaying the issues affecting the patient community at large.  This group of patients is vital for companies to reach out to, particularly as they can offer suggestions about how to better reach out and engage with 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.

Blog Disclaimer

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.