The Patient Empowerment Trifecta: Personalized Medicine, Digital Health, and Crowdfunding

The Patient Empowerment Trifecta: Personalized Medicine, Digital Health, and Crowdfunding
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The first summit organized by British Columbia’s Personalized Medicine Initiative took place last week, and I was blown away by the level of energy and excitement in the room. There were a number of really interesting talks, including Leroy Hood on the 100K Wellness Project, Julio Montaner‘s argument for treatment as prevention for HIV, Joel Dudley on incorporating genomic sequencing into clinical practice, Jim Kean on founding and growing Wellness FX, and Jill Kagenkord on 23andMe‘s vision for leveraging its rapidly growing collection of customer genetic and phenotypic data to advance medical research.

Three themes came through loud and clear at the conference, and point to how personalized medicine can lead to patient empowerment and to better health outcomes.

1. A Focus on Wellness, not Sickness

A majority of speakers highlighted the need to focus on maintaining and optimizing people’s wellness, rather than curing their sickness when wellness breaks down. Wellness is the medical equivalent of positive psychology, and is the key to generating the economic benefits that will power the adoption of personalized medicine, since preventing disease and maintaining health are likely to lead to substantial cost savings to both health insurers and to society at large.

2. Data is Power, so Patients Must Track

To turn health maintenance and wellness into a scientific enterprise, though, large amounts of data at the level of the individual are necessary. While the rapidly decreasing cost of whole-genome sequencing means that most of us will probably have our genetic data available within a few years, the key to connecting genomic information to health outcomes at an individual level is to dynamically track a wide variety of phenotypic and environmental data. This will allow researchers to identify actionable biomarkers that indicate increased risk of disease (or movement away from a healthy state), and allow patients to monitor those biomarkers and move them towards a healthier level.

This is why direct-to-consumer digital health technologies are likely to be a game-changer for personalized medicine. Fitness trackers, smart-watches, biosensors embedded in clothing, “tricorders”, and, ultimately, implantable biosensors, will generate a deluge of data that will facilitate data mining aimed at identifying key wellness biomarkers, and will help patients to monitor and modulate their own profiles.

3. Direct Financing by End Users can Accelerate Development

A third way in which the personalized medicine ethos can empower users is by allowing them, in turn, to empower the development of personalized medicine. New “democratized” financing tools like crowdfunding provide end users with an avenue to support the development of specific technologies that allow users to capture their own health data. Crucially, users can support this type of initiative both by providing capital to fund R&D and commercialization, and by providing early users who will help to refine the product or service. Joel Dudley mentioned two such technologies in his talk at the summit:

  • The Scanadu Scout – a “medical tricorder” competing for the Qualcomm Tricorder XPrize. Scanadu crowdfunded $1.66 million in 2013 on Indiegogo to fund development of the Scout, and subsequently raised $49 million in four investment rounds. A key part of the appeal of their crowdfunding campaign was that they hoped to enlist backers, who have begun to receive Scout prototypes, to participate in the clinical trial needed to obtain FDA approval of the Scout as a medical device.

 

  •  The uBiome project launched in 2013 with a crowdfunding campaign that raised $357,000 on Indiegogo. Campaign backers, and the company’s current customers, send a swab to the company and complete a range of surveys. They receive access to their microbiome sequencing data as well as to tools that allow users to compare their own microbiome to other users, track changes in their microbiome over time (via repeated sampling), and identify potential lifestyle interventions to achieve a more favorable microbiome profile. The company’s mission is to “equip all individuals with the tools they need, in order to empower them to learn about the unique balance of bacteria in their bodies”.

 

Direct-to-consumer companies like WellnessFX and 23andMe have not used crowdfunding, but they benefit from the same technological trends that allow them to offer biological tracking services at price points that are low enough to attract a large market of early adopters. In short, this convergence of trends is empowering patients – and we are all patients – to build the installed user base (the “big data”) necessary to make personalized medicine a reality.

It’s not only big government, big science, or big tech that will bring personalized medicine to you – it’s users proactively seeking the best ideas out there and supporting them directly. As Sean George of Invitae put it at the Personalized Medicine Summit – the 1970s are back in Silicon Valley, but this time the transformation will be in human biology and health, not semiconductors.

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