Rising to the unique challenges of rare diseases

Aaron Bean at Veeva explores the challenges of rare diseases
Estimates indicate that up to 30 million people in the EU may be living with a rare disease. These are defined as diseases that affect no more than 1 in 2,000 people.
The numbers partially explain why prescribing for rare diseases is so challenging relative to other afflictions. With up to 8,000 rare diseases to consider, diagnosis can be slow.
Healthcare professionals (HCPs) are not always aware of which signs to look out for within smaller patient populations. Once a diagnosis is made, it can be difficult to pinpoint the most effective treatments.
While working with pharma companies, we have seen that technology can overcome some of these hurdles. Alnylam Pharmaceuticals, a biopharma company focusing on rare diseases, has noted that field teams making data part of their everyday workflow has been key to digital enablement. It has noticed over time, that those who can embed data-driven insights into their strategies are far more likely to succeed, and to be effective, field teams need to re-evaluate their data approach across three areas: connecting to new HCPs, encouraging appropriate prescribing and improving engagement. Ultimately, quality customer reference data is only half of the recipe when it comes to successful digital enablement.

Broader access to the HCP ecosystem

Connecting with the right HCPs is important for all diseases, but essential for rare diseases. Field teams need to be able to profile, target and develop impactful relationships with the most relevant doctors across the health ecosystem quickly, so they can ramp up sales and deliver innovative treatments to patients as soon as possible.
This is where integrated customer data can be powerful. When analysing new markets, a common question asked is how many target HCPs there are in that market. We need to be able to quantify the size of a given target group and identify the key cities and hospitals where the HCPs are located. This information is invaluable for territory design.
Effective targeting relies on successfully encouraging adoption among field teams. Companies should consider a user-orientated approach to achieve this objective. This can ensure that customer data is fully integrated into the company’s CRM, so that field users can easily search, find, and download additional records when they need them. The field force then has straightforward access to real-time information and a single view of the customer, boosting its productivity and access to a broader HCP audience.
Once territory analysis is complete, companies need to be able to share customer data across different business functions, including sales, medical, marketing, compliance and finance. This means eliminating data silos so that various internal users can find relevant doctors.

Precision when prescribing

Data is everything for rare disease prescribing. As highly specialised HCPs are scarce in rare diseases, companies require sophisticated insights to pinpoint viable prospects.
Demand for high-resolution data presented a unique opportunity for the creation of an e-detailing solution, which translates vast data sets into actionable insights. The goal of the system is to encourage appropriate prescribing, while balancing efficient distribution to HCPs (whose patients could benefit from specific treatments) with transparency about the risks.
Most pharmaceutical CRM systems rely on off-the-shelf templates to organise complex, unsorted events from the real world into usable insights. However, prescribing for rare diseases requires more precision. This is where custom offline dashboards can be effective, as they can be flexed to address field teams’ unique requirements and provide more accurate insights.
Equipped with these insights, multichannel field teams have a better understanding of their territories, encouraging appropriate prescribing.

Improving HCP engagement with patients

Improving HCP engagement is key to reducing the time to diagnose a rare disease. With a narrow margin for error, HCPs need seamless access to information – for example, relating to symptoms they may be unaware of and at risk of ignoring – if they are to make an early diagnosis. This requires content that is both easy to digest and act upon.
To be effective, field teams need access to the full picture. This includes insights into patient pathways (such as surveys on the patient experience), which are important, real-world evidence that should be shared with HCPs. These insights can help build HCP awareness of the unique challenges of rare diseases, if they are part of engagement strategies.
Ideally, the approach to information aggregation should bring multiple data sources into a single platform, so data can be visualised in imaginative and convenient ways. The functionality needs to be flexible, so that future data sources can be integrated relatively easily, rather than remaining restricted to different tools and processes.
Field teams are now supplied with highly relevant leads and continuously learn from previous actions. Data should flow straight into the CRM, which will remove a lot of the worry and effort involved in data mapping.
By combining CRM data (eg, when a field force member last met with a customer) with external data sources (eg, HCP demographics, online journeys and activity), the field team benefits from in-depth insights.
This information – how HCPs respond to marketing materials – can also be used to build detailed profiles that contribute to a tailored engagement strategy.

A data strategy greater than the sum of its parts

Pharma field teams dedicate considerable resources to engaging HCPs, relying on digital channels to deliver personalised, relevant content at scale. However, given the unique challenges of rare diseases, field teams must reconsider their approach to data at each stage of their relationship-building efforts.
The starting point for digital enablement is a solid, integrated customer data foundation, so that field forces can profile and engage the right specialist doctors. It should be straightforward for teams to access and act upon insights from the data, for example, by pinpointing important territory (or customer data) changes.
Finally, a data-centred strategy could reduce the diagnosis time for rare diseases. Patient and HCP marketing insights will continuously feed into plans, ensuring that content is up to date and relevant. Information on rare disease symptoms and treatments will then flow to the right doctors. In combination, technology and data can make each interaction with a rare disease HCP more impactful.

Aaron Bean leads Veeva’s European Business Consulting team.
The team is responsible for helping life sciences companies leverage technology and data for digital transformation that can improve customer experiences to deliver better patient outcomes.