In a 2016 article in Harvard Business Review, Harvard Business School professor Len Schlesinger wrote that healthcare leaders “need to view the patient’s role as a job and then design that job in such a way as to drive the best health outcomes possible.”
While it’s true that patients are moving from passive recipients to active participants in their own care, many healthcare innovation labs are increasingly seeing patients as partners, using their insight for advancements in care for others.
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To understand how patients are helping to co-create healthcare innovations, I spoke with the Executive Director of the hive innovation unit for ViiV Healthcare, Dr. Thom Van Every, on the Outside In podcast. A medical doctor, an entrepreneur, and an innovator, he brings a unique perspective to the hive. He is one of the pioneers of the online medical space. Van Every started DrThom.com, the UK’s first online doctor service that also offered the UK’s first at-home HIV test.
As an innovation leader for ViiV, a joint venture between GSK, Pfizer, and Shionogi, Van Every and his team are focused on going “beyond the pill” to advance HIV research and deliver innovative HIV treatment and care worldwide.
Every step of an HIV patient’s journey through the healthcare system – from initial diagnosis to treatment – has its unique barriers and challenges. To understand patients’ changing needs and locate gaps in care, Van Every’s team collaborates with a global online community of people living with HIV. The community offers a different, more human perspective on how to approach HIV treatment and care. “It is often the case from my experience that companies and entrepreneurs sometimes state their problem to solve and try and enforce that on their customers. Or in this case, on people with HIV,” he explains. “It’s fantastically useful to have the end user in mind and understand what problems they have to solve and find that Venn diagram sweet spot where their problem to solve can be addressed by the solutions you have.”
It’s truly remarkable how far HIV treatment has come over the past 25 years. What used to be a death sentence is now, with treatment, a manageable chronic disease. Consider some of the progress: global AIDS-related deaths have been cut nearly in half since hitting a peak of about 2 million in 2004 and 2005, according to UNAIDS. And, for the first time, more than half of the approximately 36.7 million people living with HIV worldwide are receiving treatment.
However, living longer with HIV presents new issues. “The challenge is, how do you manage patients who are getting older and having what amounts to a normal life while having HIV and the stigma associated with that? In other parts of the world, the challenge is still getting treatment to people on a regular basis,” says Van Every.
Working with the community of HIV patients, his team learned that many patients, particularly as they age, experience a feeling of increased isolation. Similarly, many newly diagnosed patients in the community said they felt stigmatized and anxious about the unknowns and implications of living with HIV. To address these issues head-on, ViiV launched a peer-to-peer mentoring app in the United States where people living with HIV can connect with others just like them to receive comfort, support, advice, and empathy for what they’re going through.
Additionally, at-home diagnostic kits are becoming “a broader healthcare trend,” says Van Every. Besides making people’s lives easier, it’s also profitable. The direct-to-consumer laboratory test market – everything from genetic analysis to colon cancer screening – is projected to grow past $350 million by 2020, an impressive figure considering that the market was just $15 million in 2010. Similar to home pregnancy testing, At-home HIV testing kits offer an effective, accurate, and affordable option for people who want to test at home. “It really improves access for a lot of people who may not be keen to test or may be nervous about going to a clinic,” he says.
Perhaps a surprising admission by someone who himself heads up an innovation unit, Van Every acknowledges that corporate innovation units have a poor track record. But, he advises, “I think what we can forget in the entrepreneur world, and maybe in the corporate world, is that the entrepreneurial journey is running a race of unknown distance – you’ve got to get on with it, but you may have to twist and turn and it may take longer.”
All innovation is a race of undetermined length. That’s important to keep in mind. Not just for innovation in HIV treatment or heath care, but for innovation in any industry. Adding the perspective of the people you serve might not always shorten the length of the race, but it will keep you running in the right direction.