Navigating healthcare professional connectivity in rare

Written by Louise Carrington, Global Client Partnerships Director at OPEN Health on Wednesday 7th July 2021

Healthcare professionals (HCPs) can feel lost while navigating treatments of patients with a rare disease

For most rare diseases, HCPs often find themselves exploring their way through a treatment pathway for the first time, with little support. For HCPs who have been referred a new patient, there are usually no nearby specialists to discuss a case, a differential diagnosis, or a standardized treatment pathway to work within. This can lead to a feeling of isolation and often risks delays to treatment as they navigate unfamiliar waters.

This process often leads to the development of disparate pools of local expertise based on individual experience, rather than collective knowledge. In rare diseases where there has been a lack of disease-modifying agents or recent innovation, standard diagnostic, referral, and treatment pathways are either non-existent or poorly defined. This further hampers the ability of HCPs to provide the patient with a timely diagnosis, access to supportive care, and alternative treatment options.

Equally, for some rare diseases, best practice is constantly and rapidly evolving. This causes rapid change in standards of care, treatment paradigms, referral pathways, and patient expectations. Without quick dissemination of the latest data and clinical experience, HCPs can feel out of their depth and out-of-date.

Global clinical exchange will support more-efficient treatment pathways for patients

One of the challenges in rare diseases is facilitating the exchange of clinical education and experience on an international level. HCPs treating rare disease often need to look further than their direct and regional colleagues to discuss their clinical challenges. Furthermore, identifying and accessing relevant congresses and educational forums can be challenging. This sense of peer isolation is hardly conducive to furthering best practice and improving patient outcomes. Breaking down geographical and logistical barriers is critical to building a rare disease HCP community across the globe.

It’s believed that the greatest influence over an HCP adopting a new therapy or clinical practice is colleague recommendation. Therefore, when a new treatment is made available or new data change best practice care, it is important to focus not only on communicating the science, but also on inspiring impactful conversations between HCPs. Engaging peer-to-peer scientific exchange, education and key opinion leader advocacy are crucial to building educated HCP communities and preventing needless diversions in patient pathways.

Building effective HCP networks could become critical to delivering education and improving patient outcomes. These networks, whether online, through societies, or as part of the growing European Reference Networks, would provide visibility for expert physicians, and a platform to share and discuss experience across all HCP audiences.

Whilst considering connectivity in the HCP community, it is worth noting the lessons learnt from the patient community. The increased strength of the patient’s voice over the past decade has been a staggering phenomenon. In some cases, updates to therapeutic options travelled faster in the patient community than among HCPs. Sheer determination to overcome logistical boundaries in pursuit of a common goal has built global patient communities into something immeasurably powerful.

Innovation will drive HCP connectivity in a post-COVID era

There are many tools in the communications armory to support HCP connectivity, but only with innovation, collaboration, and laser focus on the challenges and the patient needs, will we find ways to overcome the barriers to patient pathways in rare.

Following many months of restrictions as a result of the COVID pandemic, the healthcare industry is equally navigating communication in the ‘new world’. Virtual meetings, digital community platforms, and online training programs are now at the heart of the HCP education landscape. But it is critical that these programs are done right and truly address the needs of the HCPs and patients. At OPEN Health, we bring together our experts across communications, evidence generation, market access, and digital, to drive innovation. We deliver solutions that:

  • Are amplified through digital channels and advanced technologies
  • Drive deeper engagement
  • Gather metrics and insights to rapidly optimize
  • Deliver innovation where it really effects change

Finally, it is always important to note that patients and patient advocacy groups are often the experts in their disease. These groups provide an unrivalled volume of experience and insight; it is therefore critical to build on patient representation to ensure that their voice resonates through all communication and education.

We are privileged to be working in an era that offers infinite opportunities for improving global connectivity. Combining technology with a desire to innovate can truly change the environment within the rare disease field, leading to improved outcomes for patients.


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