[kictanet] Sh4.7 billion health data technology in limbo

Thu Jul 5 17:21:46 EAT 2018

Jimmy
I don’t disagree, indeed I was arguing why/what KNH’s data center was for: to store the images from the 98 hospitals in MES project at least. Whether other private facilities could also use/interoperate with the system is indeed one of very many pertinent questions that I hope has been thought through by MoH already!

By the way, I should also add that the data ownership piece is not clear cut, as there is a very strong public health and disease surveillance argument around health data, usually in aggregated form, being accessed by both government and researchers, even if patients do not agree (because, for example a certain % e.g. 80% of people have to be vaccinated for a vaccination to be effective in a public health setting and governments need to know who has or has not been vaccinated).

In principle though, the general agreement nowadays is that a patient should have own their data legally and say who can or cannot access it and for what reason. In reality this is actually very tricky as most patients are not digitally literate or informed of these rights; and there is not always simple technical tools to give permission to certain individuals or institutions to view medical records. Nor is it actually particularly easy to have full interoperability or portability of medical records. Very few countries in the world have done it despite many trying to (I think Denmark and Estonia may be the only ones) across their public and private facilities.

For example, Kenya has more private medical facilities than public one and so they’d need to be integrated, yet should a government force them, or pay for them to have the relevant systems? Policies and guidelines should be in place; and I fully support efforts to have a middle-ware system to enable interoperability of data across systems. The reality of getting that done is tricky, but let’s certainly try!

Adam

From: kictanet [mailto:kictanet-bounces+adam.lane=huawei.com at lists.kictanet.or.ke] On Behalf Of JImmy Gitonga via kictanet
Sent: Thursday, July 05, 2018 12:08 PM
To: Adam Lane <adam.lane at huawei.com>
Cc: JImmy Gitonga <jimmygitts at gmail.com>
Subject: Re: [kictanet] Sh4.7 billion health data technology in limbo

Adam,

Answering for Ali, I, for one, led a Lakipia County ICT delegation to the East African Data Centre to explain to them how a county can house their ICT systems as part of a "private" cloud at the data centre. This came about due to lack of a Kenya Government data centre that counties could have access to and what a proper Tier 3 Data centre looks like, were they to imagine they can build a data centre. In fact, we found a power supply set up being built to allow EADC entry into Tier 4.

Secondly, radio images are digitally acquired then printed on film for diagnosis and patient records. The days of carrying around films should be numbered. A lot of the radiology analysis is done on the high resolution monitors. The storage is digital as well. KNH can store radiology images for the patients who have been treated at KNH as well as those referred there. But if one happens to go to the more than 10 imaging centres in Nairobi, where should the imaging data go?

The NINAFUU proposal was that, where the medical information is acquired, that information can be kept by the doctor or institution for their own future use and a copy of that particular information delivered to the patient/client since it has been paid for. That way, a cancer centre has access to the cancer data generated at their facility, and the patient has his/her cancer data along with other data from other facilities.

When the patient travels to another facility, those records, with express permission, can be retrieved and further treatment can commence. This was particularly important for patients who have to undergo new, expensive tests at the next facility when seeking medical consultation or treatment.

Regards,

Jimmy Gitonga
Mobile: +254 722 740 883
Skype: jimmygitts | Twitter: @Afrowave
On Thu, Jul 5, 2018 at 10:26 AM <kictanet-request at lists.kictanet.or.ke<mailto:kictanet-request at lists.kictanet.or.ke>> wrote:

Message: 1
Date: Thu, 5 Jul 2018 07:24:15 +0000
From: Adam Lane <adam.lane at huawei.com<mailto:adam.lane at huawei.com>>
To: KICTAnet ICT Policy Discussions <kictanet at lists.kictanet.or.ke<mailto:kictanet at lists.kictanet.or.ke>>
Subject: Re: [kictanet] Sh4.7 billion health data technology in limbo
Message-ID:
        <AA158B127E68EE4388EDC0E3AB54B7EA01488B98 at JNBEML523-MBX.china.huawei.com<mailto:AA158B127E68EE4388EDC0E3AB54B7EA01488B98 at JNBEML523-MBX.china.huawei.com>>

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Jimmy
I understand the KNH data center is primarily for the purpose of storing radiology images and allowing remote viewing from the experts there; I am not sure it is necessarily supposed to hold all patient medical data for the whole country, though some form of medical data for the 98 hospitals is supposed to be part of the project.

Ali
Personally I think we need to be careful with Counties launching IT systems; otherwise you?ll have 47 data centers?. Certainly they need to have capacity, ownership, governance roles etc. There?s already too much duplication of different systems even within counties, let alone across counties, and national standards and systems are necessary.

Adam

From: kictanet [mailto:kictanet-bounces+adam.lane<mailto:kictanet-bounces%2Badam.lane>=huawei.com at lists.kictanet.or.ke<mailto:huawei.com at lists.kictanet.or.ke>] On Behalf Of Ali Hussein via kictanet
Sent: Thursday, July 05, 2018 9:03 AM
To: Adam Lane <adam.lane at huawei.com<mailto:adam.lane at huawei.com>>
Cc: Ali Hussein <ali at hussein.me.ke<mailto:ali at hussein.me.ke>>; KICTAnet ICT Policy Discussions <kictanet at lists.kictanet.or.ke<mailto:kictanet at lists.kictanet.or.ke>>
Subject: Re: [kictanet] Sh4.7 billion health data technology in limbo

?Completely agree Jimmy.

Counties should anchor this initiative. I hope our Senators on the list are listening. :-)

Regards?

Ali Hussein

Principal

AHK & Associates

Tel: +254 713 601113

Twitter: @AliHKassim

Skype: abu-jomo

LinkedIn: http://ke.linkedin.com/in/alihkassim

13th Floor , Delta Towers, Oracle Wing,

Chiromo Road, Westlands,

Nairobi, Kenya.

Any information of a personal nature expressed in this email are purely mine and do not necessarily reflect the official positions of the organizations that I work with.

On Thu, Jul 5, 2018 at 8:58 AM, JImmy Gitonga <jimmygitts at gmail.com<mailto:jimmygitts at gmail.com><mailto:jimmygitts at gmail.com<mailto:jimmygitts at gmail.com>>> wrote:
Ali,

I left the iHub soon after and really never followed up on that. The IPRS launched much later. In my opinion, with devolution of health becoming a reality,  this system is now possible and it should be done in a "friendly" county first to iron out the system. Only then should it go national.

Making KNH the centre of the data store does not make sense. Health records are part of a person's personal information and it should be stored together. It would be easier for the owner to control it. Where should citizen information be kept?

Regards,

Jimmy Gitonga

Mobile: +254 722 740 883

Skype: jimmygitts | Twitter: @Afrowave

________________________________

P. O. Box 47910 00100

Nairobi Kenya

Web: afroshok.com<http://afroshok.com><http://afroshok.com/>

On Thu, Jul 5, 2018 at 7:37 AM Ali Hussein <ali at hussein.me.ke<mailto:ali at hussein.me.ke><mailto:ali at hussein.me.ke<mailto:ali at hussein.me.ke>>> wrote:
Jimmy

Amazing initiative. Any idea what came of it?

Regards

Ali Hussein

Principal

AHK & Associates

Tel: +254 713 601113

Twitter: @AliHKassim

Skype: abu-jomo

LinkedIn: http://ke.linkedin.com/in/alihkassim

13th Floor , Delta Towers, Oracle Wing,

Chiromo Road, Westlands,

Nairobi, Kenya.

Any information of a personal nature expressed in this email are purely mine and do not necessarily reflect the official positions of the organizations that I work with.

On Wed, Jul 4, 2018 at 8:01 PM, JImmy Gitonga via kictanet <kictanet at lists.kictanet.or.ke<mailto:kictanet at lists.kictanet.or.ke><mailto:kictanet at lists.kictanet.or.ke<mailto:kictanet at lists.kictanet.or.ke>>> wrote:
When I was at the iHub in 2014, I used to host a lunch to discuss the possibility of patient/health service client information being portable.

We started the process by looking at why a user/client would need the information to be portable. With the disappearance of the family doctor and the proliferation of "supermarket medicine" with satellite clinics belonging to hospitals and health insurers "around the corner", the ability to move with your health information became relevant. There was also the issue of tracking HIV+ clients who would register multiple times at different clinics to receive ARV medication, where the second or more monthly dose was sold to willing buyers.

Answering the question, "who owns, controls, accesses, gives permission and uses what data and in what circumstances and for what purpose", The simple answer is the user. A lot of work had been done in this area. A company known as I-TECH has already built on Open Source Software solution known as the OpenEMRConnect<https://sites.google.com/site/oeckenya/> that was the seed to build a Health Information Exchange System (HIES).

As the iHub, we were to take this idea forward to concentrate on the User side of the platform. We proposed a system we called NINAFUU. NINAFUU would be a system that was to hold patient health data at the county level. The data would be collected from facilities across each county and submitted to the NINAFUU county node. This would be in line with the current DHIS system the Ministry of Health uses. We needed however was a system that would allow citizen/patient information to be exchanged on request from a particular facility or registered and practicing doctor.

The only sticking point then is we had to wait for the rolling out of the Integrate Population Registration Service (IPRS) in order to be able to generate Unique identifiers available at registration of birth in Kenya.

As far as I recall, we were exited by the possibilities of anonymised data for research and policy development especially if correlated with other data such rain patterns.

Regards,

Jimmy Gitonga

Mobile: +254 722 740 883

Skype: jimmygitts | Twitter: @Afrowave

________________________________

P. O. Box 47910 00100

Nairobi Kenya

Web: afroshok.com<http://afroshok.com><http://afroshok.com/>

On Wed, Jul 4, 2018 at 11:43 AM <kictanet-request at lists.kictanet.or.ke<mailto:kictanet-request at lists.kictanet.or.ke><mailto:kictanet-request at lists.kictanet.or.ke<mailto:kictanet-request at lists.kictanet.or.ke>>> wrote:

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Message: 1
Date: Wed, 4 Jul 2018 08:41:31 +0000
From: Adam Lane <adam.lane at huawei.com<mailto:adam.lane at huawei.com><mailto:adam.lane at huawei.com<mailto:adam.lane at huawei.com>>>
To: Ali Hussein <ali at hussein.me.ke<mailto:ali at hussein.me.ke><mailto:ali at hussein.me.ke<mailto:ali at hussein.me.ke>>>
Cc: "kictanet at lists.kictanet.or.ke<mailto:kictanet at lists.kictanet.or.ke><mailto:kictanet at lists.kictanet.or.ke<mailto:kictanet at lists.kictanet.or.ke>>" <kictanet at lists.kictanet.or.ke<mailto:kictanet at lists.kictanet.or.ke><mailto:kictanet at lists.kictanet.or.ke<mailto:kictanet at lists.kictanet.or.ke>>>
Subject: Re: [kictanet] Sh4.7 billion health data technology in limbo

Ali

Aside from the data center hardware issue, you are right that the regulations are indeed very important. There needs to be clarity on who owns, controls, accesses, gives permission and uses what data and in what circumstances and for what purpose.. from the patients to local doctors to remote doctors to IT support staff to medical equipment management staff and beyond. I fully agree.

Adam

From: Ali Hussein [mailto:ali at hussein.me.ke<mailto:ali at hussein.me.ke><mailto:ali at hussein.me.ke<mailto:ali at hussein.me.ke>>]
Sent: Wednesday, July 04, 2018 11:23 AM
To: Adam Lane <adam.lane at huawei.com<mailto:adam.lane at huawei.com><mailto:adam.lane at huawei.com<mailto:adam.lane at huawei.com>>>
Cc: kictanet at lists.kictanet.or.ke<mailto:kictanet at lists.kictanet.or.ke><mailto:kictanet at lists.kictanet.or.ke<mailto:kictanet at lists.kictanet.or.ke>>
Subject: Re: [kictanet] Sh4.7 billion health data technology in limbo

Adam

Don't lose my point. It is super important. Under what law or regulation are we going to move around sensitive health data? This country needs to do a refresh and reboot and stop Procurement Driven tenders.

Ali Hussein

Principal

AHK & Associates

On Wed, Jul 4, 2018 at 10:42 AM, Adam Lane <adam.lane at huawei.com<mailto:adam.lane at huawei.com><mailto:adam.lane at huawei.com<mailto:adam.lane at huawei.com>><mailto:adam.lane at huawei.com<mailto:adam.lane at huawei.com><mailto:adam.lane at huawei.com<mailto:adam.lane at huawei.com>>>> wrote:
Hi Ali

I'm not sure I can comment on the data centre specifically, but I believe the project is much more than that. It is about the medical records software, servers and connectivity at the 98 hospitals so they can send radiology images to be viewed remotely (at KNH). The data centre at KNH would be to store images there and provide remote diagnosis.

Adam

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