By most standards, severe hemophilia is an infrequent disease. It is estimated that around 20,000 people suffer from it in the US. In Europe, a little more than 1 in 10,000 newborns carry a hemophilia A or B mutation. Those of them who need treatment are taken care of in around 420 specialised centers all over the continent. Hemophilia is not only rare, it is also pretty expensive. To prevent bleedings, for example into the joints, patients inject clotting factors or antibodies that they store at home. Treatment costs can add up to several hundreds of thousands euros per year, strongly dependent on how much injectable therapies the individual patient actually needs.

Digital hemophilia platform optimises use of expensive clotting factors

“Given this background, there is a clear rationale for managing hemophilia patients with a digital platform. Doing so allows us to monitor compliance, and it also allows us to correlate bleeding events and medication in order to find the optimal dosing schedule for each individual patient,” says Andreas Rösch of Rösch & Associates, a Frankfurt-based company that is offering the digital haemophilia platform “smart medication”. At the moment, nearly 1,300 hemophilia patients in Germany and Switzerland, roughly one out of three, use the application for their medication management and for communicating with their doctors. Forty-five hemophilia centers in these two countries offer the solution to their patients. 

Digital patient platforms in orphan diseases like the one for hemophilia patients are obviously useful, not only because they facilitate the individual patient management, but also because they provide real-world evidence that can be analysed and used to optimise care. “There are patients with very few or even no bleedings, but high consumption of therapies. In these patients, it might make sense to reduce the amount of clotting factor. Others might need more therapy than they actually get,” says Rösch. A digital platform can help to adjust therapies on an individual level, but it also helps hemophilia centers to assess their therapeutic approaches more broadly by comparing outcomes and amounts of prescribed therapies with other centres.

Health insurance providers show no interest

Given all this, it is surprising to hear that the “smart medication” founders have been lobbying for funding from the statutory health insurance in Germany for many years now, but without any success: “Health insurers are interested in our platform, and they clearly see the benefits of patients going digital. But they still won’t pay,” according to Rösch. One reason is probably that the insurers don’t want to attract even more of the expensive hemophilia patients. It simply doesn’t make sense for an individual health insurance company from a financial point of view to engage in a digital hemophilia platform, as long as there are other insurers that don’t pay. Unlike, say, diabetes platforms, highly specialised platforms like “smart medication” are also not particularly attractive for venture capitalists, because they are not really scalable to the millions.

The “smart medication” platform for hemophilia is currently being financed through a non-profit organisation called VFTH in which most major pharmaceutical companies that produce clotting factors are members. This model has been working for years now, but one might doubt whether it will work similarly well in the many other orphan diseases in which patient-centered digital care platforms would make sense. In fact, Rösch & Associates have recently launched a second product, a digital platform for patients with idiopathic thrombocytopenic pupura (ITP) for which no convincing financing model has been found yet.

The German Digital Supply Act: A reimbursement pathway for chronic care apps?

The difficulties to get patient-centric care platforms financed is why many in Germany are somewhat enthusiastic about a new legislation that successfully passed parliament in early November, the Digital Supply Act (“Digitale-Versorgung-Gesetz”, DVG). Thanks in part to some clever PR, it was widely reported way beyond Germany. The new law aims to create a continuously updated list of digital applications with proven value, starting in January 2020. Applications on this list – put together by the state-owned German Agency for Pharmaceuticals and Medicinal Products (BfArM) – will have to be reimbursed by all health insurers. The law also defines a standardised process for price negotiations between IT companies and statutory health insurers that is somewhat similar to how pharmaceutical companies and health insurers negotiate medication prices.

“There are many, many open questions around this law, which was pushed through parliament within months. But in principle, we think that it is the right way to go. For patient-centric, highly specialised platforms like ours, it could be a way towards more sustainable business models,” says Rösch. Not surprisingly, the key question is how “value” will be defined. The new German law gives digital health companies the possibility to get payment for their services for a limited amount of time, one year, during which the company has to provide evidence on the usefulness of its tool. But what kind of evidence is required for what kind of tool remains an open question, which allegedly will be addressed in a separate government regulation to be published in the first half of 2020.

Home care provision goes digital

Chronic disease platforms are expected to become an important component of the digital health ecosystems of the not so distant future. But there are other types of patient-centric platforms too, that do not focus on specific diseases. Among them are homecare platforms for the elderly, which are becoming increasingly popular in a number of countries. They can teach us a lesson or two when it comes to establishing a working business model in the digital age.

An interesting example from the UK is Cera, provided by London-based Ceracare, a company that is partnering with the NHS under the regulation of the Care Quality Commission. According to Ceracare founder Mahiben Maruthappu, Cera is available in 15 cities across the UK now, with three main offices, and continuing to expand to new locations: “There is substantial demand for care given the aging population, and as a result we have seen good progress with traction and partnering with the public sector.”

Cera is essentially a comprehensive homecare provider, but one with a very strong focus on digital services to make it as comfortable as possible for patients and families in need of homecare services. Customers, says Maruthappu, could access the service both by phone or online: “We will assess their care needs, provide them with a shortlist of carers who have been matched to their needs, and allow them to choose who they want to proceed with. Our technology allows us to on-board clients digitally, and manage the matching through our online systems.”

“Slotting into reimbursement like others is a strength”

What makes Cera interesting in the context of patient-centric digital care platforms is that it is more than a marketplace for digital on-boarding clients to care-providers. The platform features digital care records and offers communication pathways in all directions, including real-time reporting. Cera is also actively working with patient data in order to provide a better service: “We use data analytics to predict and prevent health deterioration in our clients. We strongly believe that this is the key to a more sustainable service and system.” 

For Maruthappu, technology is absolutely crucial, since it not only improves user-experience but also leads to better workforce utilisation and thus higher productivity: “In addition, a technology platform helps providers achieve economies of scale, where, as the organisation expands, the quality and effectiveness of services improve.” This also explains why Ceracare has managed to expand its business largely without government grants, although the company is currently in the process of applying for one: “In the UK, we are reimbursed the same way as other homecare providers. We see being able to slot into the reimbursement system like other providers as a strength, as it means we are able to grow and expand more quickly because no new financial processes are required for us.”

Room for improvement – and for investments

In spite of being somewhat health policy independent, Maruthappu stills sees room for regulatory improvement in order to make it easier to make ends meet with digital business models in homecare and beyond: “There should be more encouragement for technology uptake by care providers, for example. Improved integration of services between home and hospital would also help.” 

Andreas Rösch from Rösch & Associates couldn’t agree more: “I think what many healthcare systems and healthcare payers still haven’t realised is what an extremely powerful tool a patient-centric digital care platform can be,” says Rösch. “For most health insurance companies, investments into digital tools are marketing-driven. Insurers are not yet seeing digital platforms as tools to optimise care. But they will have to, because it is in their interest – and in the interest of the healthcare system – to make sure that therapies, especially expensive therapies, are properly used.”   

This interview was published in the latest issue of HIMSS Insights, which looks at connected care and interoperability. Healthcare IT News and HIMSS Insights are HIMSS Media publications.