A disease is considered rare when it affects fewer than 1 in 2,000 people. However, more than 6,000 rare diseases have been identified, and they collectively affect approximately 300 million people worldwide. This corresponds to approximately 5% of the global population. Around 70% of rare diseases start in childhood.
With so few people affected by each of these diseases, rare diseases are often overlooked, and many patients are only diagnosed after years of suffering. There is an urgent need for increased awareness, research, and treatment options to alleviate the difficulties faced by those suffering from rare diseases.
Cactus Life Sciences’ Senior Director, Karen Holmes, provided insights into some of the challenges and considerations associated with communicating about rare diseases. Karen has worked in medical communications for more than 18 years, primarily in the field of rare diseases. Here, she sheds light on the vital role of medical communications and the collaborative efforts essential for effectively raising awareness in this significant medical area.
What particular challenges are associated with rare diseases?
When it comes to rare diseases, awareness and understanding are typically very low among the medical community and the general public. Due to limited resources and support groups, patients living with rare diseases can feel isolated. Many general practitioners and primary care physicians will never encounter a patient with a rare disease.
Rare diseases may have relatively common symptoms, which can lead to challenges in detection and diagnosis. There are also limited scientific and clinical data, and clinical studies tend to be small. Moreover, interdisciplinary care is almost always essential in the case of rare diseases. This necessitates a collaborative and more global approach to data collection to increase disease understanding.
How do these challenges impact medical communications in rare diseases?
Since the general knowledge of rare diseases is limited, one of the key areas where medical communications plays a role is increasing disease awareness. Clear, easy-to-understand information on disease symptoms is crucial, together with advice on what to do if someone suspects that they may be affected by a particular rare disease.
It is important for medical communicators to be empathetic and not instill fear in potential patients, while also refraining from offering false hope or making false promises. All information needs to be factually correct and relevant for the reader.
Our communications need to reach the right audience with the right information. To achieve this, we need to identify who the audience is, where they are, and what they need to know. The best way to do this is to listen to patients and involve them in the preparation of these communications.
Clinical data in rare diseases are often limited, and therefore, real-world data and expert opinion become increasingly important. Communicating a drug’s mode of action to healthcare providers who may not be familiar with the disease requires a different approach compared with that used for well-known therapeutic areas.
How does Cactus Life Sciences adopt a patient-centric approach when communicating about rare diseases?
To ensure a holistic patient-focused approach, we involve our extended multidisciplinary team in communications and education efforts. Our experience in developing material specifically for patients has shown that taking the time to understand the patient’s perspective and including direct patient experience in the development of medical communications pieces helps engage other patients.
How does Cactus Life Sciences tailor communications to diverse audiences, including healthcare providers, patients, and the general public?
We have a clear understanding of our target audience from the very beginning. We are attuned to the needs of healthcare providers, patients, and their families while also considering the varying levels of expertise and knowledge within the medical community. The experience of a healthcare provider within a particular therapeutic area may vary significantly from that of a community physician dealing with many different ailments.
Adapting not only the content but also the format to suit the audience also improves engagement significantly. For example, including impactful visuals and using plain language can help make complex topics easier to understand for patients and carers. More importantly, choosing communication platforms that are appropriate and easily accessible for the audience, whether that is online or in physical format, or a combination thereof, increases engagement as well.
What are the future trends or developments in communicating about rare diseases?
Communications are evolving.
A very welcome development in medical communications, especially in the rare disease community, is the increasingly central role of the patient, not only as a reader but also in the development of materials. No one knows better than the patients themselves what is important for them.
Digital platforms and social media already play a crucial role in raising awareness and connecting people with rare diseases. Online communities and patient advocacy groups can readily leverage digital media to share information, and support and empower other patients to share their experiences.
Digital communications also facilitate “omnichannel” communication, allowing personalization of content, format, and channels while ensuring consistency across all stakeholders. Artificial intelligence (AI) and machine learning (ML) technologies are helping to speed up this process.
How can the medical communications industry continue to improve its efforts in this area?
We should continue to increase the volume and reach of the patient’s voice while communicating about rare diseases. We have come a long way in this regard, but there is still a lot more we need to do.
Keeping abreast of innovative solutions to raise awareness and personalize and humanize communication will help medical communicators engage the rare-disease community and generate empathy and understanding.
Ultimately, our aim while developing and disseminating communications is to foster the development of an informed community of medical professionals and patients to optimize the diagnosis and care of individuals with rare diseases.
Cactus Life Sciences
Cactus Life Sciences is a medical communication company that provides scientific strategy and content across the healthcare continuum, anywhere in the world ─ with a focus on science, innovation, and efficiency. We work alongside leading healthcare companies to establish the optimal role of medicines and encourage positive behaviors (physician and patient) that improve patient outcomes.