For rare disease patients, finding a diagnosis and receiving a prescription for drug treatment or therapy is only part of the battle. The time between the writing of a prescription and its first paid fill varies from a few days to several weeks or months, depending on the patient’s condition and the medication.
Longer patient wait times between prescription and first paid fill are correlated with decreased health outcomes. Collaborative patient management offers a way to reduce time to therapy, boosting patients’ chances for optimal outcomes in treatment.
What Is Collaborative Patient Management?
Collaborative patient management brings together patients, families, providers, pharmacies, payers, drug manufacturers and distributors, and other parties involved in the treatment of a patient’s condition.
A comparison of collaborative and traditional care by University Health notes that collaborative care actively engages patients and their families in goal-setting and approaches to care. It prioritizes communication and collective reflection on patients’ treatment and needs. Collaborative care is a relationship-centered rather than a process-centered approach to patient treatment.
Collaborative patient management models that specifically involve pharmacists show promise in improving patient access to drug therapies. In a 2022 article in the American Journal of Health-System Pharmacy, Natasha Stroedecke and fellow researchers found that “[e]xpansion of integrated decentralized pharmacists into target practices has increased clinical continuity and the number of pharmacist referrals.” Collaborative care also improved relationships between providers and pharmacists.
Collaborative patient management and its emphasis on relationships over processes can lead to challenges, however, as the model often runs counter to established ways of delivering care.
“Using shared values as our primary decision-making tool streamlined our collaborative care implementation,” write Elizabeth Perry and Nancy Pandhi, evaluating a collaborative care plan in action.
Using shared tools can help teams implement improved patient management as well. Collaboration can be undertaken via a digital platform, for instance, which standardizes communications and allows collaborating stakeholders to define shared values — including, when necessary, the need to reduce the time between when a patient is prescribed a treatment and when they first receive that treatment.
Reducing the Time to Patient Treatment
Rare disease patients often feel as if time is not on their side. Some patients spend years seeking the correct diagnosis for their condition. Once they receive a diagnosis, they may spend more time seeking the right treatment.
Each prescription for treatment creates more risks of delay. The need to submit pre-authorization paperwork to a provider can result in increased wait times. Payers may deny authorization for treatment or treatment may not be covered by the health plan, forcing patients to seek additional resources to cover the cost of a particular therapy.
As our recent study indicates, predicting the time between prescription of a new treatment and first paid fill of that prescription is difficult. Time periods may range from a few days to several weeks.
One thing is true: The longer patients wait, the more likely they are to experience complications as a result of that wait. These complications range from increased morbidity and mortality rates to patient-led decisions such as the decision to abandon treatment out of frustration or fear. These outcomes typically do not lead to optimal health situations for patients.
One way to reduce the time to treatment for rare disease patients is through the use of digital platforms to foster collaboration among care team members, payers and drug distributors.
In an article in the British Journal of Ophthalmology, Xiaohang Wu and fellow researchers examined the implementation of “a universal artificial intelligence (AI) platform” for collaborative management of patients with cataracts. The researchers found that the digital platform “showed robust diagnostic performance and effective service for cataracts.”
While the same AI model may or may not prove useful for diagnosis and management of rare diseases, the use of a digital platform as a collaborative locale does show promise in reducing the time from therapy prescription to treatment.
In a 2019 study, Gokce B. Laleci Erturkmen and fellow researchers examined the use of collaborative digital platforms for management of multiple chronic conditions connected to older age. The researchers examined the use of the platform in several care settings. They concluded that the platform can help providers coordinate care, order therapies and shorten the time between prescription and treatment.
How Collaborative Care Helps Patients Receive Treatment Faster
Collaborative care “has been shown to improve patient outcomes,” write researchers Brennan Bosch and Holly Mansell. Specifically, Bosch and Mansell note, collaborative care can:
- Reduce preventable adverse drug reactions.
- Reduce morbidity and mortality rates.
- Allow providers to optimize medication doses more quickly.
All three of these outcomes can be tied to reducing the time to treatment. Morbidity and mortality rates are correlated with longer waits between prescription and treatment. Reducing adverse drug reactions and optimizing dosing regimens are both automatically delayed during the time a patient waits to begin a new therapy.
Collaborative care offers opportunities to reduce time to treatment for rare disease patients. In doing so, collaborative care offers opportunities to reduce mortality and morbidity rates and improve patient health outcomes — without imposing undue costs on patients, providers or payers.
Collaborative patient management can help patients overcome other hurdles that may delay treatment. “Confusing insurance plans, uneven coverage and overwhelming provider networks leave [patients] at a loss on where to start” with regard to accessing behavioral health treatment, says Virna Little, chief clinical officer and cofounder of Concert Health.
The same hurdles exist for patients seeking treatment of rare diseases. In a collaborative care setting, patients receive access to resources to help them navigate payer demands, understand pharmacy and provider options, and otherwise reduce obstacles that stand between their doctor’s visit and their first round of therapy.
One example is the appearance of lung nodules, which are the focus of a collaborative care project spearheaded by the University of Rochester.
“About half of potentially malignant lung nodules are not followed up currently at most sites around the country, despite radiology recommendations to do so, which places many patients at risk for delayed diagnosis of lung cancer,” says Ben C. Wandtke, an associate professor and vice chair of quality and safety in the Department of Imaging Sciences at the University of Rochester Medical Center. Implementing a collaborative network has allowed participating radiologists to reduce time to diagnosis for patients with malignant lung nodules, thus improving patient outcomes.
No one likes to wait. But for rare disease patients, waiting for therapy may mean more than just frustration or annoyance. The longer a patient waits between being prescribed a treatment and receiving it, the more likely it is the patient will experience negative health outcomes related to that wait. Collaborative patient management offers an opportunity to reduce those wait times — improving patients’ health as well as reducing frustration and uncertainty.
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