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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Funded Science Q&A – Nick MacKinnon on eTreatMD’s mobile health app

Funded Science Q&A – Nick MacKinnon on eTreatMD’s mobile health app
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Nick MacKinnon is a founder and CEO of eTreatMD, a Vancouver-based mobile health startup. The company is currently running a crowdfunding campaign on Indiegogo to support FDA and Health Canada approval of its first product: the eTreatMD myHand app.

myHand is a mobile health app that lets arthritis patients automatically track the condition and stage of their hand arthritis by taking photos with their smartphone camera, and helps them to manage their condition. You can find eTreatMD’s campaign page HERE.

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Q: Why did you decide to use crowdfunding to help get the myHand app approved?

There are two reasons:

The first is that we need to have feedback from potential users on the features of the app, such as what users expect to see and what they think about what we are proposing. We wanted to communicate directly to people who could see value in the app, either as something for themselves or somebody else. There are a lot of health apps out there that help people with wellness, but what we’re doing can have real medical value. We need to distinguish ourselves, to let people know that this app is very powerful on the one hand, and very easy to use, on the other.

It is important to for us to understand our user’s needs, and it’s also part of the requirements for securing medical device clearance that we seek “stakeholder input.” You need to have this clearance to be able to say it’s a medical device, and we want people to know that, to let them know we want to give them something that is truly helpful and meaningful. © Used with permission from eTreatMDBy giving them a stake in helping to secure clearance, we’re hoping to also give them a stake in their own treatment.

We have some of what we need in this regard, but we need a lot more, particularly for the second phase of our clearance process as a Class 2 diagnostic device and following our expected clearance as a Class 1 measuring device.

When people select any of the perks for the IndieGoGo campaign, even just the $5 one, they validate themselves as potential users, making their input meaningful.

The second reason is to create awareness about us, about this particular app for people struggling with arthritis, and about the future apps we plan to develop for other chronic diseases we’re targeting.

 Q: What types of patients will the myHand app benefit the most?

 This app is for anybody struggling with hand arthritis, but it will be welcomed especially by anyone who knows how difficult it is to get any kind of extensive care and treatment from our current healthcare system. Continue reading

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