So one of the big problems is scale, I mean it is not a problem it is like the other
problem right. So, that in the government scheme, we were talking about a population
of what a 1.2, 1.3 billion, there are across India government hospitals are 14000 and
if you collect everything from the sub centers to the PHC is so, then thousands of them.
So, any solution you come up with has to work in the scale. We have looked at problems just
in Karnataka to start and there you have you know if you just add the PHCs and CHCs
and they are about 3000 odd hospitals involved. So, any solution you do has to quickly scale
up to that kind of size, they are very diverse users and the challenges these numbers while
these numbers are large, in proportion to this it is very small again it is roughly
a 100; 1000 to 1. So, there is a challenge of you are going to have a huge load on the
hospitals and typically the node gets pushed higher into the more you know the better hospitals
or the higher level hospitals and so on. So, these are there is one aspect that any technical
solution will need to come up with, and if you really want something that is going to
scale up you are really talking about a billion population that has to be addressed across
you know 10,000, 20,000, 30,000 entities and if you add the sub centers and many of these
since they have to reach the persons in the field, you have to get the Asha workers AMS
and others involved, that number just multiplies by tenfold or something.
So, but it took kind of flip to around that right of if you could published some of this
data in anonymous base. So, the moving mean etcetera will shows some of these. So, like
for example, you showed that table which said what is that infant mortality, those thing
right fine, but [vocalized-noise] you were published an infographic. The basic that you
know out of out of these minutes states suitable right data on the data this is the work. So,
whatever so, today right you will find enough competition between states on.
But all these data is public.
All the data is public. Is it in a way that is accessible to the public.
Yes once spread a. Not census data.
National health profile 2017 published every three years only, that has complete data by
state that is where I got some of this data from. So, it is available maybe it is not
present. Awareness is not there.
Analysis no they actually do their analysis. No awareness
Awareness is not there. So, yeah, but presumably the people involved and these are looking
at those sites there is data available. So, the good news is part of all this collection
of data has meant that they are able to publish them, they can tell you how many visits there
were for cardiovascular diseases across all these states and that is to some extent they
have the data. So, you could potentially drill down, the
government is trying to put some of this in the open data dot gov dot in. So, those are
happening, but I think these. So, let me I am not trying to say ITs going to solve the
problem, I am exposing a bunch of issues, and I am saying there is no solution I can
think of that will address all these; it has to be by looking at it from all standpoint,
IT alone is not the solution absolutely.
What are we saying is can IT magnify the effectiveness awesome, can it reduce pain for the patients,
can it provide better help provide better care. IT is not the endpoint right it is a
I have been talking to know what IT can do to, say that this is where we can go, but
there are lots of obstacles and impediments that are coming in their way, that have been
there along we have to see some of can be cracked.
So, partly the slide is trying to address that part of the reason it is not working
is there are multiple solutions being done, again with all the best intentions each program
has it is own solution but mental health program has no access to the dip sorry the
diabetes program as an example and they are correlated, that there is comorbidity between
those they are done independently. So, one of the challenges we face is that
you know we are saying IT, but it has to be used by such a wide variety were starting
with the ANM and Asha workers, all the way to the top m ds who are doing this thing and
they all have different, and they are all from different parts of this cultural diversity
geographic diversity language diversity and skill diversity, and we still saying we have
to have a system that works for all right. And every one of them is critical to the whole
thing working if the if you have a tablet based system that the ANM will use to make
sure that things are being tracked, that better be usable by the ANM in within their context.
While if a doctor in a consultant in a super specialty is doing it he is got two minutes
to deal with the patient and cannot ask him to type elaborate notes the problems are there
everywhere right. So, that is sorry clearly one issue is every
one of these stakeholders from the doctor to the you know the endpoint also do not see
value in this yet, they see lot of it as just I am adding data to the hospital administration
or to public monitoring order I am not seeing any benefit. So, that reduces their acceptance
of the solution it is not moving well enough. So, sometimes you have fake data also that
gets just to finish the process. By and large these have not been done with
usability in mind usability of the specific user I mean broadly maybe they look nice they
do well, but I recently was talking to a person who is working on delivering health solutions
in the field and says they had our company come and build a very nice they put their
best UX engineers, and built a very fancy interface, but it was not usable by the people
involved, but it looked very nice you know got awards for design, but it would not it
was not getting you. So, they redid it completely and it looks clunky, but is very usable it.
So, the IT approach would be to let us get a I pod type, I pad type design done well
that may not be what is needed. So, a lot of it is because the workflow is
not probably I mean pretty much every system you will see you will have to log in your
to do multiple pull downs enter data and so, that is not the way, the doctors and the practitioners
think it has to adapt to their workflow much better. A big issues about data protection
because we do not have a proper laws and regulations in place lot of doctors medical professionals
are very vary about sharing data and they do it in two ways either they do not enter
the data or they enter it in paper and keep it with them, and it is going to till some
of these regulations fully fall in place this is going to be an open issue. And of course,
we have all the usual problems, we can put all the IT systems then you build a room for
the computer then you put a UPS for it and you know you do all those things, the money
is going to things that are needed just to sustain that; and at the end of the day you
may not have any. So, we build all these complex systems in the end of it we find out that,
while initially it was assumed that good 3G connectivity is, everywhere when you go into
the field actually you find connectivity is not there and the entire system has to be
redesigned. So, depending on the amount of money available
and either get redesigned or it will get canned. So, all these are happening program by program.
Cost is a big issue there is still a lot of lack of awareness in the larger medical and
government system of what it costs to run a large software to develop and run a large
software system hardware is not a problem, we say I want to have a tablet in the hands
of every ANM some budget will be found for that, but if you go and say I need ten lakhs
more to get the software done you would not get that budget you already spent 5 lakhs
10 lakhs on this thing, what do we need more money.
So, there is a lot of lack of awareness on what it takes to build these systems. So,
we had many systems developed that fitted to the cost that was available and they do
not work, and definitely beyond the initial use the whole challenge of deploying it and
maintaining, it things change windows gets upgraded something else changes and a lot
of cost that needs to go into updating these things. Almost no program budgets for these
things ok. So, it is global awareness issue that when
policies and budgets are being defined, the tale of cost is not usually and say we can
manage it the 50,000 year AMC why should we need more than and you know a software engineer
salary starts with money multiples of that. So, those are all problems.
So, these are problems you have you know which are I would I am looking at again against
from the standpoint of technology, what are the things that are coming in the way of it
getting to what it you can; obviously, some of these are to be solved from other directions,
how is budgeting done how was that managed, how is infrastructure provided, what are the
right tools that should be made available at these points, what are the policies about
there around data protection and privacy; you cannot suddenly change the law and say
no privacy means something else then your whole system has to be redone and that those
are the challenges that are happening ok. So, while I have been saying all this it is
also a fact that public health programs are working, in their own way to different levels
of success and it is fairly process i. So, you know it is now at the stage where you
can expect that any patient say in another m c h scheme is tested for diabetes and it
is there is a very clear protocol, under which they will be handled all the way through.
And if they go to the right in at least in some states this is very well done right.
So, there are processes and one of the uses of IT would be just how to make these processes
better more enabled, how do you help the field workers to execute this process better rather
than following charts and paper and so on, is that fill in the data it should be telling
them what the next steps are. So, that is one of the uses that is being
done. So, here you see a thing where you can take a program, identify exactly what aspects
need to be technology enabled, and make it available to the right players so that they
can do their job better. That is the flavor of what we are looking at really.
So, what is the policy view of all this? We talked about all these things we said it is
difficult complex lot of standards, lot of interoperability issues, privacy issues and
so on. Anyone familiar with the policy side of this or the government's approach to this
any of you involved in that as space a health in general. So, e-Health is now a big initiative
of the government right. So, the intent is to set up an e-Health authority in India a
national e-Health authority. It is been in the works for a couple of years
presumably it will get announced anytime right there has been enough video. So, the idea
is that there is going to be with the government realizes that e-Health is something that needs
a global view that needs lot of things under it. So, how do we have an integrated health
information system, and also look at privacy and security issues that come into that, and
also how will this get deployed and rolled out and all that. So, those of you in this
space I mean I think they are still in I think the concept node consultation phase are going
on they are probably done with that. So, we should expect that some kind of roll
out will happen in some time maybe in the next year, two it was expected two years back.
So, one year back. So, I do not know when it is what the exact state something it is
a complex thing, because you are going to handover lots of power to a different authority
now which deals with a lot of the issues that health and IT and others deal with.
So, how do we guide the adoption of e-Health systems, how do you what does it mean to aggregate
these things, how to set up health information exchange because it is accepted that there
will be silos of health data, you need to think about health up front and then again
go back to what a security confidentiality privacy and so on. So, that is the goal, as
a tin in parallel with this the government has put out some standards. So, the problem
is in the medical industry so many standards. So, what is the standard, what is a universal
standard is forever under debate. So, as this indicates you do not want to create
yet another standard, just to say that we cannot use any of the existing standards right.
The government has now published EHR EMR standards for India.
So, now, it is standardized, there is a formal standards that are brought out in December
2016, and at least we have a working starting point rather than worrying about what are
the standard, the government said these shall be the standard for India after elaborate
consulting process. They are broadly taken up prevalent international standards successful
once, mostly around the ISO you know ISO basket of a standards, and specifically have recommended
open EHR as the architectural framework. So, advantageous I mean. So, from day one
it is been assumed that this will be a distributed health information system, we are we can we
do not want to say one central data we should be ready for a distributed system, and store
all data about the patient and have access infinity persistent data. So, these are going
to be come with these are standard. So, at some point they will be enforced then no were
near there right now and they have not tried to create any new standard these are all standards
that are working in different parts of the world, that are being leveraged to do this.
So, there is a formal document that is available for the last year and I guess companies and
others are looking at what it means. The current set of implementations especially in the public
health, do not conform to this. So, it will have to change over time and these are not
easy issues there are no ready available solutions for these. So, solutions have to be built,
these are standards and these are architecture specifications. So, somebody has to actually
implement something that will work in our context for the costs, and the diversity and
other things. So, that is going to be something that going on for some time. It is already
causing you know doctors hospitals others to start adopting some of these things right.
So, for instance standardizing once sno med c t as the terminology is beginning to happen,
looking at open EHR architecture is beginning to happen, I have no way to say how long that
will take or what the output of that will be and has since there is a key part of it,
the government also now just you will find this on the national health portal now.
So, actually if you are interested you should go look at the national health portal they
have a section on e-Health, they keep changing it a lot, but it is a lot of information's
there at least on what the intended approaches. So, these are very early there I mean this
is the way that standard or one year old; that means, it is probably people are just
reading and digesting this some of these web pages change every two-three months. So, these
are still very much your are time where some things are just happening. So, it is a good
time to get into it, and try to do something contribute.
So, there very clearly define that, the owner of the data is the patient and patient has
rights of privacy of it and yesterday you heard about privacy and with the current direction
in which the supreme court you know opinions are going this should get much strengthened
a lot more. In India we do not have privacy of health data by enlarge, it is very easy
for me to pretty much go directly ask somebody or go get anybody health data without too
much effort. So, that is going to get clamped down quite
a bit hopefully. In security right one is privacy is I want to protect my data, I do
not want my data to be public security is nobody should be able to hack a hospital and
get the data and so on. So, standards are being proposed around these minimal standards.
So, what level of encryption, where should encryption be done, all these are now part
of the standards that are laid out. In recently somebody hack the Adhar data base
and then stole data They did not hack the Adhar data yeah they
accessed it in a so.
Yeah. So, see those issues are there and that only heightens the need to be more careful
about this week, I mean we have to take the approach I believe that these will be part
of our ongoing solutions and it just had to figure out how to do it better you have to
learn from those right. And in medical context there is some additional things essentially
is the notion of trusts right. So, who should access your data? So, if I
have my personal health data under what conditions, and who should have access to that data, and
to what level of granularity. So, I have my personal data it is secure, but I want different
actors players at different points in time to get access to different data what could
be some of those. Insurance company.
Insurance company, that to be very careful what data they get.
Yes yeah then it access to some part of your data correct.
Families family. Family yeah, but even they might be layers
of.
Yeah they might be layers of protection.
That you are to put it not all data is accessible
By anybody. So, then trust itself could have many a hierarchy of.
Maybe I can restrict it to my immediate family. And even there is you might not want them
to see something. You have a family also suppose somebody come
to know about the son of daughter suffering from HIV they were not allow to
Exactly. So, there is different levels of confidentiality in some sense that are needed,
and some of these are protected by acts the act for the mental health and that covers
HIV all have very rigorous restriction, how the data can be shared access. So, that has
to be built into the backend in whatever way, but at the same time we want to trust doctors
and medical institutes because you need them to access data when you may not have be in
a position to give consent. One approach to privacy is consent based opening
of data I will consent who and what access they can at for what period of time, but what
you do in emergency situation? That is the unique requirement in the healthcare sector,
and it could be from any part of the world let us let us not restricted to India it could
be in any part of India, get into an accident and a doctor there has to access my data,
how do they do that? They cannot ask me or try to on my family. So, that. So, the government
is going to put in place a trust framework for this or proposes a trust framework.
At any breach of this should be act with law. Yeah. So, that is also the laws around this
would control all that is what the policy part now comes it. So, based on these a whole
bunch of the u I am hoping that the see the consumer protected data protection act, would
cover some of these things and I am sure it well.
Equation that is cover the e-Health that the more a where a data from gets stored public
or private No it does not, but those are regulations
that will come in expectations is we will say any cloud that is hosted locally hosted
in India, private public. I mean a government is already empaneled cloud providers in India
that you can put in any kind of data.
No as your EHR they are only providing the hosting service you know.
does not boundary. Right now I think it has to be India hosted
in India of course, they will be subject to the usual confidentiality and privacy issues.
So, we are assuming those guys are not going to you know violate the, but yeah it adds
to the complexity. So, hospitals are having the hard time deciding they should have inpremises
as they are upgrading a system.
So, they have inpremises systems or cloud basis systems and if cloud based which cloud
base. So, those are these are all very current happenings right they are changing fast.
So, security brings up whole kinds of issues. So, security brings up whole kinds of issues,
we have to get the whole chain working with security, and different people have different
ideas of what security means and there. So, that is a huge awareness issue that has to
come in security privacy and so on. So, it just does not mean writing something or I
have seen the term digital signature, used for somebody just signing using electronic
means like putting the jpeg there ok. So, we need something more than that and that
brings us to the others these are all needed for trading the patients better, the other
side of it is we want access to data for research the whole thing has will move only when there
is more research done, and we get better solutions, better devices better systems and so on and.
So, we have to now talk structure server what does data mean what kind of data do you make
available which is this whole notion of anonymized data.
So, the general belief is you have to make anonymize data available; you take data you
strip out certain identifiers and other things that will not the which you cannot locate
the individual, and then you make the data available in whether in public or in a controlled
form. So, that research can happen, the research can be of all kinds of things right health
care runs on data. So, you need research data, but. So, anonymization
and public access to some kind of data is required we do not have here on it the question
is, is it really on anonymous and you know some of the things you have heard in the last
couple of days about aggregation and all that should tell you it is difficult anonymize
data. So, specifically in the medical area we have this whole notion of what is called
re identification, can I take the data and re identify the person, even though the person
making the data available claimed it was anonymous and there are many many you know facets of
that. So, one classic case which is you know it
is caught that incident caused a lot of regulatory changes is this massachussets had a law that
they were trying to pass in 2009 saying that hospital visit data would be made public by
insurance companies after anonymizing it. So, they take away your name, your address,
various other things they left a few fields. Then that is a tremendous protest and, but
they just passed the governor signed it into law so; obviously, this cause also one computer
scientist at howard I believe grad student, wanted to show that this data is not anonymous.
So, he or she basically took the data that was made public, connected to certain other
public data that was available and was actually able to narrow down the governors data and
send it back to him.
Ok.
It was very ironic right and that was the point of the exercise is to show the so, that
is a huge problem that led to a complete rethink of what privacy means in health data and led
to the hipaa act and other things in 2013 I believe. So, one of the strongest data protection
act that we have is American Hipaa privacy act, which is health insurance privacy and
something act which basically says that how data can be shared, how data whether in whether
between valid entities or when it is made research. So, as an example very simple examples
would be that, you no longer put the birth date in the published data you maybe put the
year of birth. Before they said birth date is they are going to be lots of people in
the same birthday why do you need to worry about it, and this person you. In fact, use
the birthday to narrow it down. Basically all you have to take is this data
some public data like birth and death records water records, I things you can triangulate
and get pretty much any information these days that is becoming much easier with more
such data being available and social media and other things. So, it is going to be easier
and easier to triangulate and pick individuals out.
So, that is big issue. So, if I m not mistaken even the India privacy act just says you cannot
go below a pin number pin code right and we are counting on the fact that in a pin code
there are lots of people right, but what if there is some particular condition where in
a pin code there is only a few hundred people, and then the data becomes less anonymous.
So, one of the things in the US Hipaa thing is that the zip code that is you only
should have three digits if there is less than 20,000 people that zip code or something.
So, you start aggregating or showing less granular data when it is needed.
So, these are similar things are being I think you know will evolve in India also. So, which
is one level of re identification, the other especially public health data is can we start
now identifying communities, what if there is a spike in mental health disease in one
particular community and that gets public. The mental health problems are very worried
about that about that kind of because that could stigmatize the entire community, and
we do not know what that granularity will be right.
So, it is not very obvious going back to an earlier question saying, how much of this
data should we put up even if it is anonymized the fact that one particular PHC saw a spike
in a particular thing can be important information from a privacy standpoint, and we have to
get back to what is the meaning of privacy and at what level is individual versus community
and so on ok. So, law will conclude this. So, at least now
we have clarity on what data ownership has and this is part and act part in the guidelines.
So, clearly the data is owned by you your personal data is yours, right now that is
not the way to practice in India, try to get a your personal data out of a hospital
it is very difficult right. So, it says it is yours, but held in trust by the doctors
or the hospitals on [vocalized-noise] your behalf, and is owned by the patient and the
healthcare provider only owns the records and the physical and other medium that is
used to do, it not the data itself. And anyway we have the IT act which says that
personal information sensitive personal information it comes under a lot of obligations and health
records is one of those, medical records and history is already covered by the SPI. So,
that sense the regulatory framework is there needs to be understood detailed out and exercised
ok So, medical records are not meant to be published
already under the IT act we do not even need any additional act; obviously, the new act
that come in the consumer protection act will probably talk about data protection act will
talk, at some point once neha is there some acts around specific healthcare might come
in and these will tighten this. So, the framework is evolving it is coming there, but lot of
open issues lot of detailed to be work out I should say.
Sir like with always IT enable you know the services, we always have like this local health
worker at the local level. So, how do you think all this segment can contribute or like
make use of the services How can they do their part of the service
better right? As a service provider plus how they can also
contribute to you know IT enable like, is it like data collection can be denied.
Data collection they can probably provide more insights into what is happening they
can talk about the effectiveness of the system.
Right. So, I think part of the assumption in many of these things is a larger population
especially these health workers and others, will be more and more comfortable the technologies
like smartphones yet they using phones anyway right. So, that brings in a better understanding
of maybe how these should be structured, and hopefully they can give feedback on the design
itself.
And then of course, the data collection and, but may be how can they contribute from a.
I am in I mean they already have feedback systems
and things set in some form. Yeah. So, like because you know in many cases
it is only the local health workers, which are available as of you know first point of
contact and reach to the hospital is very you know takes a long time so, but. So, how
they can be like you know working in this paradigm of you know complete you know IT
enable and services how. Ok.
Their role can be you know like you know get more efficient
So, there are yeah so on. So, there are pilots out say going on right now where to give very
specific application app that a health worker would have, which would allow them to manage
what they are doing, but they can plan their day better, they can track what they doing
better, they do not have to come back and then send s m s and write reports and so on
right. So, how to make the how to integrate this within the work that they are doing and
that is happening in some places, but again early stage.
Ok Yeah I mean either when we say IT system,
I think it includes everybody involved right up to the field workers the health workers
otherwise this will break down.
I mean otherwise you only have the data collection part to some extent, but not the
healthcare delivery part of it. So, it has to be integrate into the whole delivery and
that is the intention. Ok.
I do not know how many are there yet, but so.
Thank you .