Two of the biggest commercial challenges for biopharmaceutical companies developing treatments for rare diseases are identifying and reaching potential patient populations.
For larger disease categories, this is less of a challenge; DTC advertising and well-established advocacy groups provide easily accessible channels to connect with patients and families. Conversely, in the rare disease space, particularly in diseases that lack treatment options, patients and families are often geographically diverse, lack organised physician and advocacy communities, and are challenged further by a lack of disease education. Overall, the ratio of diagnosed to undiagnosed patients is an additional concern.
These challenges provide new opportunities for companies to address care dynamics, provide resources and education, and ultimately empower patients and their families to advocate for their own healthcare. So how do companies accomplish this lofty, but often necessary, goal? A blended medical-digital strategy is essential to find and connect with patients, build patient and family networks, create educational resources and empower rare disease communities.
How do we accomplish this? First, you need digital and medical teams to collaborate on strategy. Second, you need to understand and leverage best practices. Third, you must start early and continuously optimise. Rare disease campaigns must constantly iterate and evolve over time. Closely following analytics and adjusting strategy will put you in a position for success.
The importance of collaboration
Each rare disease is unique; therefore, it is essential to develop a collaborative medical and digital team that understands its nuances, as well as the characteristics of those who live with it. At Cambridge BioMarketing this collaboration is a key component of our approach. First, our team conducts an audit of medical and digital landscapes to determine the state of the market and understand symptom patterns and gaps in information. We secure the best available medical information and identify the most powerful voices in each space. From there, we develop an integrated and targeted campaign that leverages the best medical information available, non-personal promotional programmes and experts to reach physicians, advocates, patients and families. Fundamentally, these campaigns tend to be executed digitally in an effort to impart targeted educational information to the right person at the right time. Fully integrating medical and digital teams puts you on the path toward creating more engaging, targeted campaigns while also shortening the period between patient and physician discovery.
Speak their language
For a campaign to be successful, it is important to invest time and energy in understanding the search environments and needs of each stakeholder segment. From there, formulate insights into what motivates, energises, activates and engages patients, physicians and the entire care team. In search strategy development, we seek to first understand the current scientific and medical language, as well as the natural language of patients and families. Typically, this is a major component of our landscape project from which we can develop targeted strategies to find currently diagnosed patients and their HCPs, as well as undiagnosed patients and unaware physicians. A typical implementation could leverage different organic and paid search strategies against these segments within a disease educational campaign.
The value of timing
One question we field repeatedly from clients concerns the timing of campaign development and implementation. We first define the benefits of a campaign – and its relative value – based on the phase of product life cycle development. For rare diseases, we develop disease educational campaigns during pre-launch and continue them through post-launch. In pre-launch, finding and engaging with patients can assist in clinical trial recruitment and design and market sizing activities, and can validate and broaden our assumptions about a disease.
In the rare disease category, the burden of illness is not well-characterised due to a lack of focus from the medical and scientific communities. Early engagement can greatly expand our knowledge of a disease and also provide invaluable benefits to the campaign sponsor. In our experience sitting at the helm of 10 ultra-rare product launches, we’ve found that the secret of a successful launch is investing in pre-launch and defining critical success factors. The earlier you begin using a disease education campaign the better, especially in disease areas where little-to-no information exists.
Innovation in rare disease communications is contingent upon building collaboration between medical and digital teams and developing engaging, informative campaigns that appeal to and target the needs of all core stakeholders. Early campaign development with the ability to scale and adapt across each phase of a product’s life cycle is crucial. Start by creating an integrated landscape and follow this closely by researching each segment’s natural language to understand how it speaks about and searches for disease information. Throughout the campaign, commit to constantly iterating based on analytics and engaging with users to gain directional and qualitative feedback. Most importantly, build opportunities for educational and inspirational engagements that meet users’ current and future needs and that can evolve as drug sponsors’ roles change over time.