Data tool and uses in HIV education, testing and treatment
Started by Greg Snyders on 15 Jan 2010
Greetings! I am part of a team of MIT and Harvard graduate students doing a research project for an HIV care management organization based in South Africa. They have a unique HIV education, counseling, testing and treatment platform, and as a byproduct of their primary activities they generate large amounts of data.
They are considering the use of a new mobile phone-based data collection tool developed in-house to collect more information during their HIV education and counseling sessions on person-level “knowledge, attitudes and practices” with respect to HIV/AIDS, with many ideas for other possibilities. All this information can be linked to additional databases they manage (including demographics and individual HIV status), and, with biometrics, to create a reasonably robust (and large!) panel database over time.
We wanted to see if there are others in the forum who are engaged in similar activities, to start a discussion about the most compelling uses of such data (and perhaps what organizations would value this data the most), as well as data challenges you have experienced in your work. Thanks!
Regards,
Greg Snyders
Keywords: HIV, Mobile Devices, Patient Education, Software, behavior change, data, treatment adherence
Gauti Reynisson
Hi Greg,
Here in Kampala, we have been looking at openXdata.org, which seems to do exactly what you guys are thinking about. Perhaps they could share their experience.
Just email "contact AT openxdata.org", they were very responsive and helpful.
Regards,
Gauti
4:52 AM, 26 Jan 2010 | Permalink
Joaquin Blaya
Hi Greg,
First I would mention that there are several groups that have joined together to build an open platform which different mobile devices can use. You may have come across that community (called OpenROSA), but I wanted to emphasize that I think it would be good if this group considered building on top of that movement rather than starting something from scratch. I'd be more than happy to connect you with people within OpenROSA.
As far as your specific question of compelling uses of this data and challenges with data quality. The former question about data quality challenges is a common challenge that many organizations face with or without electronic systems, and there the problem is staff time to be able to enter this data when they have too many patients and electronic systems where you don't have enough access to them e.g. computers or that don't allow easy entry of this data. I'm cc'ing Cheryl Amoroso, EMR coordinator for Partners In Health in Rwanda, to this email to see if she has suggestions as to groups or papers that have discussed this challenge.
For the question of use of data, it's a fairly complicated question and I think it centers around what you hope to accomplish from the use of this data. Are you thinking of how to analyze this to publish (academic activities), create reports for funding or government agencies, or perhaps seeing this as a way to get more resources to the organization?
Warm regards,
Joaquin
4:41 PM, 28 Jan 2010 | Permalink
Greg Snyders
Hi Joaquin,
Thanks so much for your reply (also, Gauti, thanks for your reference to openXdata!).
We are familiar with the OpenRosa initiative, and can certainly suggest to our host organization to incorporate their framework in their system (which has been prototyped). Also, I ironically met with Cheryl last summer in Rwanda doing work with another mobile health group, and hope to hear if she has any suggestions on data quality as I know that PIH is doing some very interesting things in Rwanda with health data collection and use.
Re: uses of this data, our host organization will have the capability to merge KAP responses with HIV status, demographics, as well as treatment and adherence patterns for positive individuals (possibly other information, as the collection methods and modules are fully extensible) -- over time, at the individual level.
We think such data might be a compelling source of information for research organizations and others to better understand the drivers of HIV transmission, as well as the most effective means of prevention and adherence. So, we are trying to understand how best to get this data (and collection capabilities) to researchers who would be able to best utilize this information in their work.
Any thoughts would be greatly appreciated!
Thanks,
Greg
1:29 PM, 31 Jan 2010 | Permalink
Joaquin Blaya
Hi Greg,
Ok, now I understand a little bit better that you'd like to be able to use this data for academic purposes. For these purposes, I think the best way to go forward is to create a link with specific researchers who are interested in this area and could create research projects out of this work. This might not be that easy in that most researchers will be interested in fundable projects, so the harder part will be to figure out what is the question you want to ask, as opposed to how to get the data. I do however, think that this is a great opportunity to integrate research as part of the project that you are working on and hopefully tie this research to an institution that is able to fund or get funding for this e.g. a university and have a win-win situation.
Joaquin
4:00 PM, 4 Feb 2010 | Permalink
Jean Baptiste Mulongo Kaulu
cette méthode, de prévention peut être acceptable ,mais le plus souvent , c'est meilleur de puiser dans la culture et environnement des peuples, ces peuvent doivent être assocociées elles
dans la prise de décision et activement ; tout projet qui ne rencontre pas les préoccupations de la population est voué à l'échec ; j'ai travaillé dans un projet financé par FHI le test pour le Hiv et le test accompagné au counseling . On a dé couvert qu'il yaura des bonnes solutions y compris toutes les actvités génératice des revenus ;
2:22 AM, 27 Feb 2010 | Permalink