Healthcare market research into rare diseases presents unique challenges that often require a highly specialist approach. Obtaining meaningful insights can be complex due to the low prevalence of conditions, which limits both the pool of patients and the healthcare professionals (HCPs) who treat them. This scarcity mean researchers often need to deploy tailored methodologies to ensure reliable data. Studies often need to account for geographic dispersion, rare disease knowledge gaps among HCPs, and variability in treatment protocols. As a result, achieving representative samples requires a mix of precise targeting, long-term participant engagement, and innovative data collection methods.
Barriers to Conducting Rare Disease Research
Patient-centricity revolves around making patients the focal point of healthcare systems, clinical trials, and research studies. Rather than solely focusing on treatments, outcomes, or medical professionals’ perspectives, patient-centric research prioritises understanding patients’ experiences, their needs, and their day-to-day struggles. It puts the emphasis on delivering value to patients, improving their quality of life, and ensuring their voice shapes the future of healthcare solutions.
What is driving the rise of patient-centricity?
In most cases, the rarity of these conditions creates an immediate barrier. Often rare disease patients are dispersed across large geographic areas, limiting the potential sample size. Additionally, since many rare diseases are not well understood, recruiting qualified HCPs or experts familiar with the condition can be challenging.
Another barrier is the emotional and psychological toll on patients and caregivers. Given the severity of many rare diseases, participants may be hesitant to take part in market research. Researchers should be sensitive to these concerns, ensuring their recruitment methods are patient-friendly, and engagement is handled with care.
Challenges Vary by Country
Conducting research for rare diseases is not a one-size-fits-all endeavour, especially when it comes to international fielding. For instance, regulatory frameworks, cultural attitudes, and healthcare infrastructures vary widely across countries, directly impacting research efforts.
- Regulatory differences: In some regions, privacy regulations like GDPR in Europe make patient recruitment more complex due to strict data protection laws. In contrast, countries with less developed data regulations may pose challenges around data reliability and ethical concerns.
- Access to HCPs: In countries where rare diseases are recognised and supported by healthcare systems, finding HCPs may be easier. However, in developing nations or regions with fewer specialist professionals, recruitment can be a challenge.
- Patient availability: Some countries have patient registries or advocacy groups that make recruitment easier. Others may have few, if any, organised patient groups, making it more difficult to locate eligible participants.
Understanding these regional differences is important when planning research, as an approach that is successful in one market may not be as practical in another.
Key Considerations When Choosing a Fieldwork Partner
When it comes to fielding rare disease projects, there are a few factors to keep in mind when selecting a fieldwork company:
- Experience in rare diseases: Rare disease research requires specialised knowledge of the disease and population. Look for a fieldwork partner that has experience recruiting for the respondents you’re looking for as they will likely know how to navigate the complexities of finding eligible participants.
- Global reach with local expertise: Having a fieldwork partner that can offer global and localised support with teams that understand local regulatory and cultural nuances. They should have established relationships with patient advocacy groups, specialised clinics, and healthcare institutions.
- Ethical recruitment practices: Due to the sensitivity of working with patients who may be experiencing severe symptoms or emotional strain, you’ll want to find a fieldwork partner that adheres to ethical standards and prioritises the well-being of participants, including ensuring informed consent, proper communication, and safeguarding personal information.
Overlooked Aspects of Rare Disease Research
Given the small pool of potential recruits, retaining participants across multiple studies becomes essential. Building trust with patients and HCPs in rare disease research is a continuous process.
Additionally, logistical considerations, such as the need for multi-lingual recruitment efforts or the integration of telemedicine for remote regions, are often underestimated. These solutions can help broaden the scope of recruitment and ensure more diverse representation in research.
Future Solutions in Rare Disease Research
As technology continues to advance, several advancements could improve rare disease research.
- Artificial intelligence and big data: AI can be instrumental in identifying patterns in large, unstructured datasets that may not be obvious through traditional methods. This could aid in finding rare disease patients or identifying HCPs with relevant experience more efficiently.
- Patient registries and databases: The rise of digital health tools, patient advocacy registries, and online health communities present promising avenues for recruitment.
Conclusion
Conducting healthcare market research for rare diseases requires a highly nuanced approach. From understanding country-specific regulations and infrastructure to selecting the right fieldwork partner, every stage of the research process must be carefully planned. By addressing the barriers and embracing future technological solutions, the quality and efficiency of rare disease research will hopefully continue to improve, ultimately providing better support for patients and the healthcare professionals who treat them.
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