Stream: patient empowerment
Topic: Olivier Karasira's Presentation
Grahame Grieve (Jun 16 2020 at 17:58):
Hi @olivierkarasira thanks so much for your presentation, and even more for your work. Of all the work I've seen, it feels to me that you have the most prospects for making a real difference to people's lives, and it's exciting for us to see adoption of what we're doing in Africa, which we're keen to support.
You end your video by asking us to help. Great - how can we help?
Grahame Grieve (Jun 16 2020 at 17:59):
and what does https://sovereignty.network/ actually do in your work?
Virginia Lorenzi (Jun 16 2020 at 18:26):
Hi @olivierkarasira ! Loved your talk at devdays today. I was curious if any of the medical records you are trying to access exist electronically and if so what EHRs are used?
Virginia Lorenzi (Jun 16 2020 at 18:29):
Also, I was confused with what you meant by data license. Did you mean a kind of identification, like a driver's license, or did you mean the opportunity for someone to license a dataset?
Or something else?
Virginia Lorenzi (Jun 16 2020 at 18:32):
@olivierkarasira have you considered what happens when the children grow up? we think about that alot. In the US we have laws that prorect adolescent confidentiality and start giving adolescents their own access. Also, if you as an adult consent to the sharing of your child's data beyond the care context, what will that mean for them when they are older?
Olivier Karasira (Jun 16 2020 at 19:57):
Hi Grahame , thank you for the comment this is really encouraging us .
We need support on the following :
• FHIR resources to consider students behavior and cognitive load capacity reports from schools
• To improve the technical and structure of educational platform we are using to be more useful to health and fhir.
• To access to technology such as Optical Character Recognition (OCR), Neuro Linguistic Programming (NLP), Watson (IBM) to easy parents and data champion when collecting health data.
Lloyd McKenzie (Jun 16 2020 at 20:03):
Do you have (non-identifying) examples of the reports?
In terms of OCR/NLP/etc., are you looking for technology licensing or something else (those wouldn't be standards organization activities, but it's possible some of the organizations who hang out here might be able to help.
Grahame Grieve (Jun 16 2020 at 20:04):
thanks. What kind of data do you collect around behavior and cognitive load capacity? @Lisa Nelson has this data come up in the context of Gravity/SDOH?
Grahame Grieve (Jun 16 2020 at 20:09):
Looking at your other ideas... a key underlying enabler is to build the community of people who can make things happen for your platforms and services. We've been really struggling to get a FHIR community going in Africa. If we collaborated to create a FHIR community in Africa (through events, online communities, teaching courses, hackathons, cloud solutions), would this help with those things?
Olivier Karasira (Jun 16 2020 at 21:08):
@Virginia Lorenzi
Hi Virginia, thank you for your support. As you can imagine, the EHR situation in many part of Africa is very basic. When they are available (not often) access is not possible for patients, and paper is the way things are done for most patients. So we are starting by putting the data from paper directly in people’s mobile phone by transforming it manually. So, 1) their data can follow them anywhere. 2) and if it is in FHIR and SNOMED CT, then it can be interoperable and we hope can be accessed elsewhere (anywhere in the world?), and more in the future on the ground in Africa too. Medical professionals here in Rwanda and Burudni don’t know anyone doing this kind of things yet. We hope it can give better data and better health
About Children’s and adolescents rights
Could you please ask this to The Sovereignty Network? We are using their platform, and just started. What I know is that they have done patient record permissions before, and they know how to do detailed access. I know there will be ability to transfer to the child the record when they are adult.
Olivier Karasira (Jun 16 2020 at 21:30):
@Virginia Lorenzi
Data license. Yes, I mean license a data set. It is our data. If we have it we should be able to license it. if we can make our own copy, it is our personal property. There are many researches done in Africa. E.g. pharamaceutical. If we make very good records for research, then we the people can benefit better from that.
Olivier Karasira (Jun 16 2020 at 21:36):
@Grahame Grieve
we are using the 5 personality traits ( for behavior) and bloom taxonomy ( cognitive load ) approach for the educational platform, we capture electronic data with teachers mobile phone in the class. But now we are brainstorming how to connect with FHIR , I would like to know any expert for behavior and cognitive load working with FHIR converter.
Oh Grahame, that would be very nice. We are first in Rwanda and Burundi, we think. And of course we would like to collaborate with others in FHIR in Africa. And we also want to collaborate outside Africa, so we can learn. Community in Africa is so important. We combine Education with Health, they cannot be separated from each other here. That is my mission. And Community is also part of Health. I want to build up teams of Data Champions, who can help regular people get their paper data transformed into FHIR. I have spoken a lot about this with Hamish MacDonald about this. Do you know him?
Olivier Karasira (Jun 16 2020 at 21:40):
@Lloyd McKenzie
Hello Lloyd, nice to meet you. Can I ask you to talk to The Sovereignty Network about reports? We are using their platform to do our activity, and turn paper into FHIR! they have many plans to help us as “Data Owners” then use the data , e.g. reports. Because as we have learned from them. It is our data, and we should own it. And we should get benefit from it.
OCR NLP etc. Anything that helps us do manual entry more efficiently would be very nice. Also, we want to do QA on the data we enter. The more time we can do QA instead of manual entry, the better. But I worry we don’t have money to pay license fees.
Grahame Grieve (Jun 16 2020 at 21:50):
hey @olivierkarasira can you tell us more about the https://sovereignty.network/ - what do they actually do that you use?
Morgan Gleason (Jun 16 2020 at 22:10):
@Lloyd McKenzie I think you meant that to me and if so yes. I will add it later.
Lloyd McKenzie (Jun 16 2020 at 22:30):
@olivierkarasira is there any chance you can get someone from Sovereignty Network to join here? It'll be easier to have the conversation with them if they can see the context of the discussion. Something like personality traits would normally be captured in FHIR as Observations.
Dave deBronkart (Jun 16 2020 at 23:00):
olivierkarasira said:
About Children’s and adolescents rights
Could you please ask this to The Sovereignty Network? We are using their platform
Ha ha clearly Hamish & company need to join the FHIR community! I knew him long ago at Lifetime Health Diary, where he was trying to do similar things. Bring him over! :slight_smile:
Grahame Grieve (Jun 16 2020 at 23:02):
see #new zealand
Olivier Karasira (Jun 17 2020 at 09:44):
@Grahame Grieve
We do two things before sending data to Sovereignty. First, we help the person get their source data (usually on paper). Then we manually transcribe the data into medical terminologies like SNOMED and LOINC. Then with patient permission and confidentiality we send the data to Sovereignty and they create a personal account, this account is owned and controlled by the person. They then convert the data we transcribed into the personally owned account in their FHIR Server. So it is the Sovereignty platform where the data is converted in FHIR, under the ownership and control of the individual. They showed us how to do this. It completely changes the game for us in Africa. We can do things that we could not have imagined before. We can do all of this just on our PC and mobile phones.
Olivier Karasira (Jun 17 2020 at 09:47):
@Lloyd McKenzie
Hi Lloyd, I talked to Hamish MacDonald, CEO of The Sovereignty Network, I don’t think he has access to this channel. But I asked him your question.
To be clear there was no personality traits or behavioral data sent from us to the Sovereignty FHIR Converters. It was things like conditions, labs, medications etc. But before I meet Sovereignty a month ago I spent many years trying to measure cognitive load and behavioral issues in collaboration with teachers , so I am would like to have that data represented in FHIR too. Any advice and suggestions in this area very appreciated.
Morgan Gleason (Jun 17 2020 at 10:42):
@Grahame Grieve @Dave deBronkart yes it did get corrected. They first told me that I must have told them that if it was in the EMR. When I told them that it made not sense, they corrected it. Of course, they only sent it by mail even though I specifically asked for email. I have gotten several issues corrected using this form.
Morgan Gleason (Jun 17 2020 at 10:43):
@Virginia Lorenzi yes that sounds like a great workgroup to join. Send me the details
Dave deBronkart (Jun 17 2020 at 11:43):
Morgan Gleason said:
Virginia Lorenzi yes that sounds like a great workgroup to join. Send me the details
Yo @Virginia Lorenzi I'm lost on what group you mean - busy thread!
Dave deBronkart (Jun 17 2020 at 11:45):
Morgan Gleason said:
They first told me that I must have told them that if it was in the EMR.
This is SUCH a pervasive problem. I think ultimately fixing it will require putting content in training courses for medical staff, plus journal articles and anywhere else about the frequency and sources of such errors.
@Morgan Gleason did they also distribute it to the other 3 docs as you requested or did you have to do that?
Dave deBronkart (Jun 17 2020 at 11:48):
olivierkarasira said:
Lloyd McKenzie
Hi Lloyd, I talked to Hamish MacDonald, CEO of The Sovereignty Network, I don’t think he has access to this channel.
Well he certainly can :-) ... as you know, it's open to the public, as I believe all of HL7's activities are. :-)
They make a point of listening, which is how we ended up in this conversation!
Dave deBronkart (Jun 17 2020 at 13:21):
Dave deBronkart said:
Ha ha clearly Hamish & company need to join the FHIR community! I knew him long ago at Lifetime Health Diary, where he was trying to do similar things. Bring him over! :slight_smile:
I forgot, Hamish / Sovereignty Network is an entrant today in the Startup Track, 2:45-3:25. https://whova.com/portal/webapp/keyco_202001/Agenda/931263
@Grahame Grieve this may be of interest
Lloyd McKenzie (Jun 17 2020 at 15:29):
Seeing as there's a @Hamish MacDonald registered on Zulip, I invited him to this chat to see if he's the Hamish in question :)
Grahame Grieve (Jun 17 2020 at 18:51):
@olivierkarasira - thanks. I have thought for a while that a service like what The Sovereignty Network offers is a great model for going forward in Africa, and that done well, it'll allow Africa to get ahead of the old world, where entrenched interests prevent proper patient orientated information flow
Grahame Grieve (Jun 17 2020 at 18:52):
I'm going to talk to Hamish to make sure I understand what their plans are.
Grahame Grieve (Jun 17 2020 at 18:53):
can you share examples of the data you end up with for the 5 personality traits?
Dave deBronkart (Jun 17 2020 at 18:53):
Grahame Grieve said:
I'm going to talk to Hamish to make sure I understand what their plans are.
He's presenting in the Startup Track, which started a few minutes ago, though your questions will surely go beyond, you being you :slight_smile:
Grahame Grieve (Jun 17 2020 at 18:54):
so they are. Well, I guess i'll have several ways to connect then ;-)
Morgan Gleason (Jun 17 2020 at 19:21):
@Dave deBronkart yes they did distribute it to the other docs! In each correction where I have asked they have actually
Olivier Karasira (Jun 17 2020 at 20:21):
@Grahame Grieve
Teachers are using in 2 boarding schools the structure in the link below to quickly give a category to any information regarding the student involvement or discipline during the class ( full comment and details can also be provided later on the platform ) . we are glad to share this link and get more feedback from experts in health and education.
Lloyd McKenzie (Jun 17 2020 at 20:36):
My leaning is that these would be captured as observations, perhaps as part of an observation panel
Hamish MacDonald (Jun 17 2020 at 21:10):
@Grahame Grieve I sent you a chat on the Whova app, I look forward to chatting with you soon. As new things often seem to play out, we had no idea that Sovereignty would be a fit for Africa early on, but you go with where you can solve a problem, right? Very keen to collaborate with the FHIR community, we have set the platform up to be as attractive to people who know how to get and convert healthcare data as it is for the people who want to get their data. (In our lingo, we are call them Data Champions and Data Owners, respectively).
Hamish MacDonald (Jun 17 2020 at 21:34):
@Michael Lawley I found out about the competition just before the deadline submission - so we thought, " A little early, but let's give it a go". We have proven end to end internally, and are working to get things in place to open up.
Dave deBronkart (Jun 17 2020 at 22:41):
@Hamish MacDonald we need to find a way to teach you about threads. @Michael Lawley 's question was in the @Hamza Salem thread, not Olivier's. Let me know privately if you want a screen-share tutorial.
Lloyd McKenzie (Jun 17 2020 at 22:42):
I moved it
Dave deBronkart (Jun 17 2020 at 23:03):
@Lloyd McKenzie is a magician. :magic wand:
Olivier Karasira (Jun 18 2020 at 07:56):
@Lloyd McKenzie @Grahame Grieve @Dave deBronkart @Hamish MacDonald
Schools are the perfect environment to build this culture of owning and keeping health data updated in Africa , parents and schools work together to raise children so each side has important information we can use as health diagnosis. At schools level we can easily structure rules to follow students health by enhancing the relationship between schools, parents and data champions ( they collect and clean files for any clinic visit of the student ). Once the values of health data is clear to parents, we can easily onboard them too.
René Spronk (Jun 18 2020 at 08:45):
This touches upon the efforts of some other countries (I'm aware of a few in Europe, e.g. UK) that try and have 'social care' data available to those who provide 'medical care'.
Olivier Karasira (Jun 18 2020 at 10:13):
@René Spronk
We are helping Teachers to have more structured and standardize reports we can easily turn into interoperable records. Teachers can always add more details and comment on the student behavior but will first select the matching category in the link below using her/his mobile phone during class session . I’ m so thankful to have more discussion with experts in social care to reward our approach and improve it together.
Dave deBronkart (Jun 18 2020 at 11:21):
olivierkarasira said:
Schools are the perfect environment to build this culture of owning and keeping health data updated in Africa , parents and schools work together to raise children so each side has important information we can use as health diagnosis.
This makes me think, too, that we've repeatedly seen (in the US at least) that schools are the place where culture change can be effective. If I recall correctly seat belt use, tobacco and recycling were all addressed successfully by teaching the children, who brought the message home to parents (and grew up with it of course).
I mention this because here I see a chance to do something some of us have envisioned: teach people early in life to get engaged with their health data, as a way of being involved with their health.
Lloyd McKenzie (Jun 18 2020 at 14:47):
What would be the right group to develop curriculum modules around this? What would be the curriculum objectives? Should we add that as another project for our group to start at least framing?
Olivier Karasira (Jun 18 2020 at 19:48):
Thank you all for this great opportunity
Debi Willis (Jun 19 2020 at 12:45):
@olivierkarasira, I would love to have a conversation with you to see how we can help you. We have been collecting patient data on paper and sending it into electronic medical records, research databases, or any other place. We can also send it to multiple places at the same time. We can send it anywhere and in any format. We are collecting many different kinds of data including medical records and SDOH. It is used in schools, homeless shelters, and medical clinics using both paper and electronic formats. The data is then converted, scored when necessary, and sent to wherever it is needed. If you’d like to chat, we can see if we can help you.
Hamish MacDonald (Jun 19 2020 at 21:54):
Hello @Debi Willis , @olivierkarasira let me know about your offer of help regarding collecting patient data on paper and transforming it. We would very much like to talk with you about that. If your systems are able to upload the data to our platform's FHIR Server to make the manual data processes quicker and more efficient for our "Data Champions" like Olivier and his team, that is something greatly sought after. I had a look at your product lineup and got very excited looking at your Wellness Visit Quality Data Capture and Scan Forms as only healthcare data geeks can! :) I do believe there is lots of scope for your clinic products too moving forward. Business-wise, we have designed the platform for companies like yours that offer needed services to offer them directly to the people that want to use them. Would you like to chat next week with us? Between Rwanda, the US and New Zealand let's see if we can work out a time that doesn't cause too much insomnia for one or more parties!
Debi Willis (Jun 20 2020 at 00:22):
Absolutely! Email me at Debi@MyPatientLink.com and we can get a time setup to talk.
Olivier Karasira (Jun 22 2020 at 11:54):
@Dave deBronkart @Debi Willis
Thank you again @Grahame Grieve for the encouraging note at the closing day of DevDays competition. My team is back to work with hope and courage to accomplish what we have committed to do with the FHIR community. As a member of The Sovereignty Network, we have access to their FHIR server and their data converters that can handle a wide range of data types, so we can be Data Champions, but we desperately want to make our data sourcing and our data transcribing process more efficient.
The hardest part of our work is to collect papers after a patient clinic visit then clean them, we spend so much time and manual energy here and I'm sure technology can help. For example, OCR and NLP and voice recognition technologies might make the transcribing of sourced paper data quicker. And if there is something we can check the quality of the transcribed and cleaned data output we do (QA) that would also be good. E.g. Any system or experts who can help check our accuracy of using Shrimp (to find the SNOMED CT “magic number”).
If we can get better, we would like to do not just as Data Champions working for Data Owners in Africa, but we would also like to do this as an outsourcing service for Data Owners around the world. We have the motivation, and cost advantage in Africa gives us an advantage we can use to give good value at reasonable price.
Finally, as Hamish and I always talk about, making people’s mobile phone as the “true source of data” in Africa is possible, because we have such few EHRs to begin with. Maybe this is actually our advantage in Africa to create interoperable health record for everyone on their mobile phone! And this can be good for the value of Data Owner data so they can make income by licensing later on The Sovereignty Network to healthcare companies like pharmaceutical and for R&D.
Lloyd McKenzie (Jun 22 2020 at 19:32):
You might ask about experience around OCR/NLP on the #implementers stream - there tend to be a wider range of technical people there than there are on this stream
Hamish MacDonald (Jun 22 2020 at 22:06):
Lloyd McKenzie said:
You might ask about experience around OCR/NLP on the #implementers stream - there tend to be a wider range of technical people there than there are on this stream
Thank you, @Lloyd McKenzie We shall do.
Last updated: Apr 12 2022 at 19:14 UTC
