The healthcare industry has evolved dramatically in the wake of the COVID-19 pandemic, making the importance of providing disease information more profound than ever, particularly when it comes to those with rare diseases. The pandemic has draped the world in fear and uncertainty, but understanding what is driving the behaviors of both patients and HCPs is paramount to attenuating these healthcare concerns and ultimately optimizing our approach to supporting the rare disease community through communications and engagement.

How can we, as healthcare advocates, better understand the challenges defining the journey of a rare disease patient? Certain insights and trends have emerged that can help inform approaches to addressing rare disease communication and care. A global survey of 141 respondents representing more than 40 rare conditions was conducted by Magnolia Innovation, a healthcare research consultancy, and Xperiome, a global healthtech company specializing in rare disease. The results of this survey revealed 3 key areas of insight:

Insight #1: Rare disease patients have been thinking a lot more about their disease as a result of COVID-19

The pandemic has created a heightened sense of urgency for many individuals with a rare disease, as many patients were confronted with access challenges, confusion about treatment effects, and mounting fear over their susceptibility to the virus. Notably, the link between rare diseases and the immune system made some feel especially vulnerable.

In fact, the results of the survey revealed that patients with rare diseases experienced a significant impact on quality of life, particularly those who were diagnosed during the pandemic.

The result of this toll manifested itself in several ways, such as a more fervent desire for information on how to better manage their disease. The dramatic changes in attitudes are evident in the below chart that illustrates the growing concerns and considerations punctuating the rare disease community's shifting priorities.

These findings clearly underscore the aggravated effect the pandemic has had on those suffering from rare diseases, suggesting the need to develop communications and approaches that can address this constellation of anxieties.

Insight #2: Despite growing self-advocacy, patients have struggled to find quality sources for information given the overburdened healthcare system and lack of trust in online channels

Another insight that emerged from the survey revealed frustrations over inaccessible resources as well as inconsistent information. COVID-19 imposed a substantial burden on the healthcare system, with many providers and practitioners needing to shift focus to the virus. Because of this, patients with rare diseases found it difficult to receive not just the medical attention they desired, but also the treatments they required.  

This relegation left many patients feeling like they had to be more self-reliant, fostering a desire to seek out information on their own. Unfortunately, their go-to source of information—the internet—was being inundated with conflicting information about the virus, which engendered a categorial distrust in this avenue of research.

These results point to a distinct need for the rare disease community to have improved access to information from credible sources.

Insight #3: There is an opportunity for pharma and patient advocacy groups, working together, to grow their presence and demonstrate commitment to rare disease patients

The third critical insight that emerged from the survey highlights actionable opportunities for health advocates, marketers, and providers to collaboratively commit to optimizing care for rare disease patients.

Patients who participated in the survey report receiving minimal support from pharma companies during the pandemic, with responses indicating dissatisfaction with how manufacturers allocated resources to COVID-19 patients and in effect neglected the treatment needs of rare disease patients.

However, it should be noted that patients did report an appreciation for pharma companies' dedication to vaccine development.

Moving forward

The survey conducted by Magnolia Innovation and Xperiome brought to light critical information about a patient population already burdened by diagnostic and management challenges.

The increased uncertainty and decreased trust in other institutions during the pandemic have suggested an important opportunity for pharma to focus efforts on supporting rare disease patients by:

• Broadening the understanding of how COVID-19 disease, treatments, and vaccines impact the rare disease population
• Providing educational materials to support conversations around rare disease and COVID-19
• Leading the conversation by reaching out to patients and physicians
• Collaborating with patient support groups to support further advocacy in the rare disease community

As the delineations of healthcare continue to evolve, understanding the behavioral drivers and attitudinal insights of patients with rare diseases is paramount to adjusting approaches to communication and support. Partnering with other trusted organizations will not only increase trust, but—more importantly—will ultimately amplify the voices of the rare disease community.