Patient-First Model: High Tech Meets High Touch for Individuals with Rare Disorders


Donovan Quill, President and CEO, Optime Care

Industry experts state that orphan drugs will be a major trend to watch in the years ahead, accounting for almost 40% of the Food and Drug Administration approvals this year. This market has become more competitive in the past few years, increasing the potential for reduced costs and broader patient accessibility. Currently, these products are often expensive because they target specific conditions and cost on average $147,000 or more per year, making commercialization optimization particularly critical for success. 

At the same time precision medicine—a disease treatment and prevention approach that takes into account individual variability in genes, environment, and lifestyle for each person—is emerging as a trend for population health management. This approach utilizes advances in new technologies and data to unlock information and better target health care efforts within populations.

This is important because personalized medicine has the capacity to detect the onset of disease at its earliest stages, pre-empt the progression of the disease and increase the efficiency of the health care system by improving quality, accessibility, and affordability.

These factors lay the groundwork for specialty pharmaceutical companies that are developing and commercializing personalized drugs for orphan and ultra-orphan diseases to pursue productive collaboration and meaningful partnership with a specialty pharmacy, distribution, and patient management service provider. This relationship offers manufacturers a patient-first model to align with market trends and optimize the opportunity, maximize therapeutic opportunities for personalized medicines, and help to contain costs of specialty pharmacy for orphan and rare disorders. This approach leads to a more precise way of predicting the prognosis of genetic diseases, helping physicians to better determine which medical treatments and procedures will work best for each patient.

Furthermore, and of concern to specialty pharmaceutical providers, is the opportunity to leverage a patient-first strategy in streamlining patient enrollment in clinical trials. This model also maximizes interaction with patients for adherence and compliance, hastens time to commercialization, and provides continuity of care to avoid lapses in therapy — during and after clinical trials through commercialization and beyond for the whole life cycle of a product. Concurrently, the patient-first approach also provides exceptional support to caregivers, healthcare providers, and biopharma partners.


Integrating Data with Human Interaction

When it comes to personalized medicine for the rare orphan market, tailoring IT, technology, and data solutions based upon client needs—and a high-touch approach—can improve patient engagement from clinical trials to commercialization and compliance. 

Rare and orphan disease patients require an intense level of support and benefit from high touch service. A care team, including the program manager, care coordinator, pharmacist, nurse, and specialists, should be 100% dedicated to the disease state, patient community, and therapy. This is a critical feature to look for when seeking a specialty pharmacy, distribution, and patient management provider. The key to effective care is to balance technology solutions with methods for addressing human needs and variability.  

With a patient-first approach, wholesale distributors, specialty pharmacies, and hub service providers connect seamlessly, instead of operating independently. The continuity across the entire patient journey strengthens communication, yields rich data for more informed decision making, and improves the overall patient experience. This focus addresses all variables around collecting data while maintaining frequent communication with patients and their families to ensure compliance and positive outcomes. 

As genome science becomes part of the standard of routine care, the vast amount of genetic data will allow the medicine to become more precise and more personal. In fact, the growing understanding of how large sets of genes may contribute to disease helps to identify patients at risk from common diseases like diabetes, heart conditions, and cancer. In turn, this enables doctors to personalize their therapy decisions and allows individuals to better calculate their risks and potentially take pre-emptive action. 

What’s more, the increase in other forms of data about individuals—such as molecular information from medical tests, electronic health records, or digital data recorded by sensors—makes it possible to more easily capture a wealth of personal health information, as does the rise of artificial intelligence and cloud computing to analyze this data. 


Telehealth in the Age of Pandemics

During the COVID-19 pandemic, and beyond, it has become imperative that any specialty pharmacy, distribution, and patient management provider must offer a fully integrated telehealth option to provide care coordination for patients, customized care plans based on conversations with each patient, medication counseling, education on disease states and expectations for each drug. 

A customized telehealth option enables essential discussions for understanding patient needs, a drug’s impact on overall health, assessing the number of touchpoints required each month, follow-up, and staying on top of side effects.

Each touchpoint has a care plan. For instance, a product may require the pharmacist to reach out to the patient after one week to assess response to the drug from a physical and psychological perspective, asking the right questions and making necessary changes, if needed, based on the patient’s daily routine, changes in behavior and so on. 

This approach captures relevant information in a standardized way so that every pharmacist and patient is receiving the same assessment based on each drug, which can be compared to overall responses. Information is gathered by an operating system and data aggregator and shared with the manufacturer, who may make alterations to the care plan based on the story of the patient journey created for them. 

Just as important, patients know that help is a phone call away and trust the information and guidance that pharmacists provide.


About Donovan Quill, President and CEO, Optime Care 

Donovan Quill is the President and CEO of Optime Care, a nationally recognized pharmacy, distribution, and patient management organization that creates the trusted path to a fulfilled life for patients with rare and orphan disorders. Donovan entered the world of healthcare after a successful coaching career and teaching at the collegiate level. His personal mission was to help patients who suffer from an orphan disorder that has affected his entire family (Alpha-1 Antitrypsin Deficiency). Donovan became a Patient Advocate for Centric Health Resources and traveled the country raising awareness, improving detection, and providing education to patients and healthcare providers.


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