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Patient first – transforming HIV treatment in India

Posted on: Tuesday 30th of November 2010

With personal health records from the likes of Google and Microsoft heralding the beginning of a new information enabled era, Janssen (Johnson & Johnson’s pharmaceutical company) has been rethinking how to tackle one of the world’s best known killers: HIV. Instead of taking a ‘more drugs’ approach, they are helping patients live healthier, longer via tailored personalized information about their treatment, based on information they volunteer – what we’d call Volunteered Personal Information.

The service is still in its early stages – the business benefits have yet to be specifically tied down (see below). That said, the general direction of travel is obvious and game changing: a health care market that’s evolving from medics ‘providing drugs’ to one where success depends on doctors and patients working together and sharing information to maintain and improve health.

The amazing truth about HIV is that it is one of the world’s best understood diseases. Yet still 1.8-2.4 million people die of AIDS-related causes every year. This, despite the availability of drugs and clinical expertise that should allow them to live a full and productive life for 30-50 more years. Janssen wanted to understand what’s stopping this from happening. When they spoke to patients and doctors they found one key factor: how patients access and use information.

The World Health Organisation and the US DHHS literature says that HIV patients can be treated efficiently and affordably using generic medication for 3-7 years. Yet the experience in India is that an estimated 25% fail treatment within 12 months. Why?

In the first year, there are a lot of changes in the patient’s life: not just metabolic changes but financial stresses and strains and social stigma. Patients need access to information and expertise to cope not just with the disease itself but with its impact on their daily lives. But attending an expert HIV clinic is daunting, both financially and psychologically. Many duck out. If these patients could be supplied with better information about how to cope, without having to visit a clinic, their treatment regimes could improve markedly.

Janssen’s new service, developed in collaboration with partner organizations with interests in improving health for underserved populations, provides clinical advice delivered by voice and text over the mobile phone. The answers provided by the system are fully personalized, based on the individual medical status of the patient. This data mostly comes from information volunteered by patients themselves.

This achieves three things. First, it tackles the ‘clinic as a barrier’ challenge. Second, it’s driven by the patient: the patient seeks help, support and advice when the patient feels he or she needs it – not according to the clinic’s appointment diary. Third, it allows for interaction and updates between clinic visits. When/if the patient does visit a clinic the clinician can spend more time treating the disease and less time questioning patients about the evolution of their medical situation. Result: few, more productive clinic appointments.

The benefits to patients are obvious, but how will Janssen create corporate value from such a service? Surely it just wants to sell more drugs? One important benefit is that it helps demonstrate drugs’ real effectiveness. A key issue in all chronic conditions is drug compliance: patients forgetting or not wanting to take the drugs when they should, or as often as they should. It’s hard to prove a drug’s effectiveness if people are not taking it! Janssen’s system helps remind patients to keep to their drug regime.

Also, by making the system open and public platform rather than proprietary, Janssen is helping to develop it as a platform for better assessment of drugs’ real effectiveness. This is a potential benefit to pharmaceutical companies bringing new better drugs to market.

A second potential benefit is that it opens up new markets and new revenue streams for Janssen. One way for a drug company to make money is to sell expensive drugs. Another way, however, may be to offer services that enable patients to be more effectively treated using cheaper generic drugs for a longer period of time. For health providers, the second option may be a better use of money. The business model rewards the effectiveness of the treatment as a whole, not just the drug.

There are still many things to work through: the use and function of health records; who has access to the information that’s generated and for what purposes; how to objectively measure the outcomes; how to flesh out the business model. But the idea at the heart of the service is simple and compelling. How doctors and patients engage is a potential crucial element of treatment (‘the clinic as a barrier’). Also, treatment is much more likely to be effective if it is driven by information from the patient (very often in the form of questions), when the patient needs help. Keeping a record of these interactions generates a far better picture of the patient’s progress than occasional conversations in a clinic.

In this way, rethinking treatment from the point of view of how patients want to engage, rather than from the traditional point of view of how medics want to dispense it, opens up huge opportunities for both cost savings and improve health outcomes.