Clinical geneticists, with expertise to manage genetic disorders, are few and geographically dispersed. Paediatricians and other physicians play an important role in diagnosing early to ensure patients receive the treatment and support as soon as possible. Since the number of therapies available that can effectively treat rare diseases continues to grow, timely treatment is vital for survival and beneficial health outcomes in rare diseases.
“Any initiative to accelerate diagnosis in rare disease has to be welcomed. Any delay causes a lot of emotional distress for families and, very importantly, the patient can experience irreversible loss of function whilst waiting for an accurate diagnosis.” – Gavin Jones, Director of Rare Disease, OPEN Health
Companies can help raise disease awareness by engaging with these physicians by driving impactful campaigns using a multi-channel communication approach. Scientific meetings are a valued source of learning among HCPs as they allow for updates on the latest research and interaction with key opinion leaders (KOLs). Companies can support these by ensuring that content is memorable, engaging, and leaves the audience with key messages that will positively affect their clinical practice. Meetings, whether local or international, allow HCPs to interact with experts and facilitate knowledge transfer regarding best practice in diagnosis and referral. Involving patients in these meetings can provide their perspective and help the HCP better understand the patient’s experience. Companies can also help produce practical materials that summarise key information in a succinct way, to serve as a reference for instructing physicians on how to manage or refer patients as appropriate.
As referring and prescribing doctors in rare disease can be small in number and geographically spread, companies can also look to digital initiatives. In addition to activities such as educational and topical webinars, ‘virtual multidisciplinary teams (MDTs)’ are a way of bringing together experts and interested HCPs from disparate geographies to discuss learnings from challenging cases. Online learning platforms with interactive and engaging content can quickly provide audiences with key information, and Independent Medical Education activities offer a route to inform HCPs on broad aspects of rare diseases in a balanced, non-promotional manner.
Patients themselves can also be empowered to become ‘experts in their disease’, and utilise information developed by patient advocacy groups, often in collaboration with biopharmaceutical companies. Companies can help here through appropriate engagement of these groups and facilitation with KOLs and other MDT members to ensure the information is complete and relevant.
The aforementioned initiatives can help foster beneficial public–private partnerships to optimize standards of care and health resource utilization. To know more about how OPEN Health can help with all or more of the mentioned initiatives, contact Sahar Samara at Sahar.Samara@OpenHealth.ae from OPEN Health Dubai.