Patient support programs for rare disease patients
Introduction
Access to high-quality specialist healthcare, close to home, is often cited as a top priority for rare disease patients.
When launching an orphan drug into a new territory, feedback such as this can help to ensure the success of your launch. It’s a case of thinking further than the licensing and distribution of the drug alone to begin to consider the wider health and care needs of the patients you hope to support.
For this reason, many pharma companies are turning to patient support programs to improve patient outcomes, boost relationships with local healthcare practitioners, and make sure their product reaches its full potential.
What are patient support programs?
Patient support programs are increasingly being used to supplement and strengthen patient care. Through patient support programs, pharma companies can help patients and their carers develop knowledge and skills so they can manage their condition and treatment more autonomously and effectively.
PSPs are normally delivered by specially trained nurses and healthcare professionals, both face-to-face and digitally, and are designed to improve patients’ wellbeing and long-term health outcomes. Patient support programs are tailored to each specific disease but will often include:
- Helping patients and carers deal effectively with the symptoms of the disease
- Supporting patients and carers to manage their treatment, its side effects, and dosage more effectively
- Providing practical advice and psychological support to patients and their families
Types of patient support programs
Patient education programs
In Europe, where healthcare is largely state-funded, patient support programs are commonly driven by the potential for severe side effects and risk to patient safety, or adherence to their treatment. In these cases, patients must be closely monitored and supported after being educated fully about the potential side effects of their medicine and associated risks.
Patient support programs can also help with disease and symptom management through complementary therapies, emotional support, and enhanced training for patients and their families.
Patient assistance programs
In the US, patient assistance programs can be used to support access to rare disease medication from a financial perspective. This may include managing insurance issues and providing support to secure financial assistance.
Benefits of patient support programs for patients and pharma companies
Patient support programs offer a range of benefits to individuals navigating complex and often challenging healthcare journeys. They are designed to:
- Improve treatment adherence through medication reminders and coaching, education, and counselling
- Enhance patients’ understanding of their condition and how better to care for themselves
- Help with disease and symptom management through complementary therapies, emotional support, and enhanced training for patients and their families.
Patient support programs can also benefit pharmaceutical companies, beyond improving patient outcomes.
These programs enhance the overall value proposition of pharmaceutical products and contribute to the company’s success in the following ways:
- Increased prescriptions – When clinicians can see patients thriving on a new product, their confidence in the product grows, making it more likely that they will prescribe it.
- Opportunity for real-world data capture – Real-world data provides observational data – rather than data collected in an experimental setting – and is becoming increasingly important for reimbursement purposes. Also, understanding the realities of the drug’s use can help guide further product enhancements and developments.
- Supports a patient-centric approach – Offering comprehensive patient support programs can demonstrate a commitment to putting patients at the heart of product development, boosting a company’s reputation among healthcare providers, patients, and caregivers.
Improving patient adherence across Europe: challenges and benefits
International biotechs aiming to enhance patient adherence across Europe face a unique set of challenges and opportunities when it comes to navigating the diverse healthcare landscape of the region.
Europe’s complex regulatory environment and varied cultures, languages, and healthcare infrastructures all make the roll out of adherence strategies more complicated. Having bespoke patient support programs, aligned to the subtle cultural differences is essential. It’s also crucial that companies collaborate with European stakeholders and patient advocacy groups to understand the intricacies of reimbursement systems in each country.
Despite these challenges, improving patient outcomes through tailored adherence initiatives is an attractive opportunity for international biotechs to help shape the evolving European healthcare landscape. By providing an enhanced level of care, patient support programs can help patients adhere more closely to their treatment plans and maximize the potential benefits. This can lead to more robust and reliable real-world data collection which, in the case of orphan drugs where clinical trial data is scarce, can be incredibly important for a wider European roll out.
Sciensus’ patient support program blueprint
Sciensus is a leading provider of patient support programs that are delivered face-to-face or remotely by highly qualified healthcare professionals (HCPs) across the whole of Europe.
We have a deep understanding of individual regulatory frameworks and can rapidly mobilize our large clinical workforce. We use our in-depth knowledge and clinical expertise to understand your needs, research the condition your product can treat, and highlight any areas of unmet need. From this, we can build a proposal for a holistic patient support program for your product.
We engage with patient advocacy groups to understand lived experience and existing support services, as well as reviewing scientific papers and working with opinion leaders to design a program that targets those unmet needs.
Once up and running, we collect patient data and report on their experiences of side effects and the treatment’s impact on the disease’s symptoms.
We also manage clinical risks and quality and take a pan-European approach to managing a patient support program. Not only does this mean the same high standards of care are applied to patients across the whole continent, but your program also benefits from being managed through our unified IT system for accurate data capture and reporting.
Our services
Holistic interventions
We engage with key opinion leaders and national patient advocacy groups to design patient support programs that address the unmet needs of patients and their caregivers. We have a vast network of HCPs across all European countries allowing us to care confidently for all patients enrolled in our programmes.
Adherence support
Our interventions draw from the latest research in behavioural science and consist of patient profiling followed by evidence-based personalized interventions. Our patient support programs are proven to optimize treatment adherence.
Real-world data collection and evidence generation
We design patient support programs that allow the capture of patient and clinician-reported outcome measures to generate real-world data and evidence. These are becoming increasingly important for reimbursement purposes.
Adverse event reporting
Our experienced pharmacovigilance team ensures that all adverse events are reported to the manufacturer within one business day. They work closely with our HCPs, ensuring data accuracy and consistency. In the last 12 months, we have achieved 100% compliance with reporting requirements on pharmacovigilance and adverse event reporting.
Industry leading experience
Established international network
From patient support to full commercialization
Schedule a meeting with our team
To discuss your challenges and create a strategy for accessing Europe tailored to your business needs, please complete the form below. Our team will contact you to schedule a meeting and provide a complimentary consultation.
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