5 Things Patient Advocates Want Pharma and the Healthcare Industry to Know

The COVID-19 pandemic has presented many obstacles, yet the healthcare industry continues to march forward to meet the needs of patients. With physical distancing, new office protocols and the widespread use of telehealth, the patient experience is changing–particularly for people living with chronic conditions, who may require more regular access to care. 

To truly understand the impact of the changing patient experience on attitudes and behaviors, and the industry as a whole, Health Union recently passed the mic directly to the source. Through a virtual content series entitled The COVID-19 Effect: How Pharma Can Adapt to the Evolving Patient Experience, patient advocates living with multiple sclerosis, psoriasis, Crohn’s disease, Parkinson’s disease, migraine and lung cancer shared their personal accounts of life with a chronic condition during the pandemic and beyond. Presented alongside Health Union’s trusted survey data from tens of thousands of respondents, these live conversations shed light on what’s top of mind for patients through unforeseen challenges. 

While much of each session focused on treatment journey and COVID-19, advocates were also given the opportunity to share advice for pharma and the healthcare industry–access any or all of the session recordings to hear the full conversations, or read on for five excerpts highlighting what patient advocates want you to know: 

1. Recognizing and treating the whole person can ultimately impact compliance.

PlaquePsoriasis.com advocate Reena Ruparelia feels strongly about holistic health, and would like to see pharma encourage a blend of medication and lifestyle changes, which could help to reinforce that the industry is focusing on caring for the whole person.

For Reena, holistic health also has an impact on treatment compliance; when incorporating lifestyle changes, such as diet and mindfulness, she cares for herself more and is less likely to skip medication. Living with psoriasis, or any chronic condition, is often a difficult journey, and finding the right treatment can be really helpful–but addressing more than just prescription medication can go a long way. 

2. When determining the success of treatment, consider each patient’s unique needs.

For many people living with chronic conditions, pain is not the only thing that has an impact on quality of life. In order to understand the depth of impact, it’s important to ask patients who they are and what matters to them. What defines a “successful” treatment? Does your definition of successful treatment match the patient’s definition?

Migraine.com advocate Kerrie Smyres shared an anecdote about a friend’s experience working toward her PhD and living with migraine. A doctor prescribed a medication that reduced her friend’s pain by several notches, which in the doctor’s mind was successful. Yet in her friend’s mind, the treatment was a failure as the brain fog that came along with the medication impacted her ability to work on her degree; it didn’t matter that her pain was decreased, because she was still unable to achieve her desired day-to-day life.  

3. Your ads might impact an outsider’s perspective of a chronic condition–be responsible.

Advocacy goes beyond supporting non-profit organizations; as a pharma or healthcare industry professional, you are a voice for patients through all that you do. In addition to improving quality of life through treatment, marketers can advocate for patients by changing the narrative around chronic conditions.

For example, many chronic conditions are heavily stigmatized, and advocate Kerrie Smyres recalled a past advertisement that she felt fed into the stigma associated with migraine. While Kerrie noted that she’s seen improvements over time, it’s important to continue moving the needle, and create messaging that combats stigma. 

4. Use words that real people living with chronic conditions would use.

LungCancer.net advocate Lisa Moran made it clear that she wants to hear about treatment experience first hand. She shared a story about a friend with lung cancer who was invited to speak on a panel about a stage I clinical trial. While her friend discussed her experience with the clinical trial drug, she was cut off by a doctor who began speaking about what it was like to take the drug, without having experienced it himself.

The same goes for advertising–when she has the chance, Lisa actively participates in advisory groups knowing that they may be used to develop messaging. The voice of the patient, including the real words used to describe their experience or a given product, have the potential to better resonate than the words we think they would use.  

5. Patients deserve better options and awareness of those options.

For advocate Amanda Osowski, who is living with Crohn’s disease and is immunocompromised, life changed significantly during the pandemic. Amanda used to regularly visit an infusion center for her treatment, but was rightfully nervous to continue with the rise of COVID-19. As a health literate individual and self-advocate, Amanda was able to initiate home health infusions early on in the pandemic, which have saved her both risk and anxiety. But what about those individuals who are less familiar with navigating the healthcare system?

Understanding that people living with chronic conditions are already vulnerable, even more so during a pandemic, Amanda believes it’s invaluable for pharma and insurance companies to find ways to let patients know their options.

To hear additional first-hand thoughts from people living with chronic conditions, view one or all of the session recordings.