A Digital Platform to Support the Rare Disease Community

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A Digital Platform to Support the Rare Disease Community

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The Challenge

A biopharma focused on rare diseases was sorting out how to better serve patients. We realized several ways to do this via the HUB and working with case managers. We knew we had systems to send out information to the patients that received our drugs via the specialty pharmacy. However, this really meant there was only one-way communication – from the HUB to the patient. There was little opportunity to make this a two-way conversation.  We did send surveys  with drug shipments. But, these surveys were simply one document of the many received in the shipment. Although we took action on responses this was a slow and tedious process, and responses were always up to our own interpretation. AND, the survey return rate, though higher than industry standards, still only maxed out at 25%. There had to be a better way. Also, how do we really know about adherence rates besides basing those rates on what was shipped?Shipping rates is not a true indicator of use, only an indicator of shipment/reciept – not actual usage. How do we really understand the needs and habits of our end-users?

What could we do to ensure our case managers were constantly updated about patient/caregiver needs, provide better support for patients/caregivers, and get a handle on real adherence rates?

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The Solution

Our idea was to provide a digital platform/app that would grow as needs are better identified. But, if the patients/caregivers really did not need a platform why build one? Let’s ask THEM. We had already set up patient/care giver advisory boards. We had built great relationships that provided us with great direction. With the guidance and leadership of advisory board members we undertook a simple survey to assess if a digital platform would be helpful, and, if so, how. We also asked about security and other concerns about using an app to house their medical/lifestyle data.

Once we received the survey results we were thrilled to see the data – we were on the right track with a digital platform but there were also surprises at how the app would be used. The survey uncovered continuity of care issues that loomed larger than we had ever anticipated. The responders saw the app as a way to get new healthcare staffers and ER docs up to speed quickly, thus reducing the time and hassle for the patients to get immediate care when the disease they were managing flared. Afterall, we are dealing with rare diseases; every time one of our patients traveled out of their immediate community or moved elsewhere there was a high potential to see a new provider who had absolutely no clue about their disease or how to manage it.

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WE liked the idea of and app but what do patients/caregivers really need?

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The company had put in place all kinds of systems to support patients but we learned how tough their lives became when dealing with new providers, which was often, especially in the ER. The app would serve as a personal health record, proof of their medical history.

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As patients opt in, and they can do so at a few differnet levels, we will be able to collect patient reported outcomes (PROs). We would be able to create a two-way conversation from which we will continue to learn how we (HUB, commercial & field teams, R&D, Clinical Operations, etc) could better serve them.

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The patients/caregivers knew we were listening to them and taking action on what they told us. They saw that certainly the app could help with the brands but the app also serves THEM – a win-win.

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Once budgets are approved we will take the steps to provide the app/platform. We will customize the app based on the combined needs of the patients/caregivers/biopharma company. We will roll-out a basic version with updates planned every six months. With each update we will apply learnings from users. Caregivers/patients will always be part of the ongoing development. 

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