The rare disease treatment revolution: Pioneering patient-centric transformation in pharmaceutical customer engagement

With over 30 million individuals in the United States alone affected by 7,000 rare diseases,¹ it is crucial to provide these patients with timely access to diagnosis and prompt treatment where it is available.

Empowering patients with a deeper knowledge of their disease and the available treatment options is the primary goal of patient engagement, which helps to reduce the often prolonged periods of uncertainty following diagnosis and speed up the path to starting treatment.

Fortunately, recent years have seen the landscape of rare and orphan disease patient engagement undergo a transformative shift, with comprehensive support for patients and their families prioritised from the beginning of treatment.

In this article, Nareda Mills, Global President, Patient Solutions at Inizio Engage, explores the unfolding evolution of patient engagement models by examining the challenges facing patients and healthcare providers (HCPs), and the strategies pharma is putting in place to revolutionise rare disease care.

Breaking down treatment barriers for patients

Following the diagnosis of a rare or orphan disease, patients often encounter the challenge of finding a suitable specialist who can initiate the appropriate treatment plan. In many cases, the HCP delivering the initial diagnosis may have limited experience in the specific disease area, which can lead to potential delays in connecting the patient with the right specialist for their unique needs.

The longer these delays persist, the greater the risk of patient disengagement. Consequently, patients may turn to unreliable sources found online and across social media in search of alternative treatment methods. This poses significant health risks, underscoring the importance of ensuring patients receive prompt and comprehensive information about the available treatment options.

To mitigate the risk of disengagement, it is crucial to establish clear expectations and provide comprehensible patient education. This will make patients more likely to remain committed to their prescribed treatment throughout its course.

Helping patients navigate the challenges of securing healthcare coverage

Obtaining access to and securing coverage for prescribed treatments is a critical obstacle facing many US patients after their diagnosis. Navigating complex treatment options and patient assistance programmes can become a daunting task, especially when treatments come with a high price tag.

Fortunately, dedicated patient engagement partners have emerged to provide crucial support in overcoming these challenges. They offer services that encompass verifying patients’ insurance and benefit coverage to ensure alignment with their specific plan, whether through commercial or public health insurance.

The spectrum of services offered by these providers extends to assisting patients in determining their eligibility for co-pay assistance programmes offered by drug manufacturers. This assistance becomes particularly crucial for patients requiring immediate treatment, as it expedites the process of acquiring the financial support necessary to proceed with their treatment promptly.

Across both sides of the patient experience, dedicated Field Reimbursement Managers (FRMs) play a pivotal role in bridging the gap, offering valuable insights into the payor landscape. Armed with this knowledge, HCPs are empowered to guide patients through smoother treatment journeys from the outset. Informed HCPs armed with a clear understanding of the intricate cost and coverage aspects associated with specialised therapies ultimately pave the way for improved patient experiences.

Moreover, these services have expanded to assist patients at earlier stages of their journey, covering aspects such as seeking treatment, obtaining prescriptions, and addressing their payment concerns. The expanded service offerings include investigating the benefits available, verifying coverage, and providing prior authorisation support and submissions — often carried out electronically to streamline and accelerate the process.

It is common for the newer, typically more expensive treatment plans to face initial denials, with payors often requiring patients to have already undergone failed alternative treatments or specific biomarker testing.

To avoid such denials, it is crucial to educate both patients and HCPs on the prior authorisation process, ensuring that all necessary clinical notes are submitted to the payor to secure treatment qualification.

Future-proofing patient engagement services

As we look to the future of patient engagement services, advanced technologies are increasingly being leveraged to accelerate the diagnosis and care of patients with rare diseases.

The potential of artificial intelligence (AI) and natural language processing (NLP) could provide significant value in these areas, from diagnosis to treatment — and beyond.

One example is utilising AI technology that harnesses medical records, patient-reported data, and genetic information to assist in symptom recognition, resulting in an impressive diagnostic accuracy rate of 79%.²

After diagnosis, this technology can also empower patient engagement partners to listen to patient interactions and derive valuable insights from them. With the combined capabilities of AI and NLP, these powerful tools can detect confusion during calls made to HCPs and equip agents with the most appropriate actions to address issues effectively.

Additionally, these tools can aid in identifying patients at high risk of discontinuing treatment, enabling HCPs to offer timely and tailored support to ensure uninterrupted access to the necessary treatment.

Embracing partnerships for a patient-focused future

As the healthcare landscape continues to evolve, it brings regulatory, technological, and treatment changes that pharmaceutical companies must adapt their patient engagement services to.

By teaming up with the right partner dedicated to supporting patients, companies can effectively tackle these challenges by providing comprehensive support throughout the patient’s diagnosis and treatment journey.

Beginning with disease understanding and finding appropriate specialists, this type of partner provides a service where individuals can seek guidance for their specific disease state and the treatments that may be available to them.

Whether it is clarifying information found on unverified websites or locating the right specialists to provide treatment, this service helps patients navigate their options and understand the necessary tests for treatment eligibility.

By engaging with these experts, pharmaceutical companies can enhance patients’ treatment adherence, facilitate better care throughout their journey, and contribute to improved healthcare outcomes.