Maneesh Juneja: The potential health data marketplace

People are starting to ask,
who owns my health data? Who has access to
my health data? And who profits
from my health data? And these are
questions that are only starting to be asked now after
many years of people collecting health data. So at the moment, there’s
a lot of misinformation. And some of the organisations
that are looking to ask those questions are
journalists, mass media. And some of the headlines
that they’re putting out there are leading to a damage in
trust between the general public and the institution,
say the NHS, who may be collecting
that data on people. The government was
trying to push through to launch
to link the hospital records and the
primary care records for 53 million
people in England. Actually they did a leaflet
door-drop to every household in the country. And even despite doing
that and raising awareness, there was a huge
public backlash. There were doctors,
hospitals, the general public at large– privacy groups who
said, well, wait a minute. You can’t just
roll this through. You have to consult us. So that whole backlash
has led to a delay of that launch of six months
so the government can work out how to actually consult all
the different stakeholders in the right way. Through the use of wearable
technology and absence sensors, it’s now possible to
collect data on our health, on our bodies, in between
visits to the NHS, which is how data is
collected on us at the moment. So a couple of examples that
have recently launched– one is called Datacoup which
is based in New York. They’re a startup that is
aiming to build the world’s first personal data marketplace
where you can say, OK, I want to share
my Facebook data, my Twitter information, with
these brands around the world. And how much are they willing
to pay for my personal data? And they’re looking at
potentially health somewhere down the line. A very interesting
concept has come out of Switzerland called
Health Bank where they’re looking at creating a
globally-owned patient data cooperative where, let’s just
say, patients around the world would volunteer to
share their health data into this
cooperative, knowing that each of those
patients around the world owns and controls
their health data and can potentially be
financially rewarded for deciding to share
that data with, say, a pharmaceutical company. And I predict that there’s going
to be more and more start-ups who are going to be popping
into this space of personal data marketplaces or patient
data cooperatives. So I think one of
the opportunities is actually that currently
many people are talking about having
patient-led healthcare, focusing on the patient. What are the patient’s needs? And actually, at
the moment, patients don’t really have that much
leverage in the healthcare system because they’ve
got nothing to play with. And what I see, through this
collection of personal data, and then owning and controlling
it, is that groups of patients, be it having a rare disease,
at a global level, saying, actually, we can
finally start to have some leverage over
pharmaceutical companies, researchers, policy makers,
healthcare systems– because we’ve suddenly
got something which is potentially more
valuable than the data you’ve collected on us
when we visited the doctor. And so, that may change
how these large entities in healthcare react when
patients suddenly say, hey, if you’re not putting
our needs first, we’re going to withdraw
access to our data from your organisation. And that is a potentially
a force for social good. There are also, as
we’ve discussed today, there’s a possibility that if
people, at an individual level, are incentivised, or
rewarded financially, through these personal data
marketplaces for sharing their health data– what if
they falsify their health data, in the way that at the moment,
some people who are given activity trackers
in the workplace to monitor their activity
levels as employees are putting their
activity trackers on dogs, so that actually they are
perceived by their employers to be the most active employees.

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