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A Mobile Solution- #CrowdMappingU: Voice, Vision and Access to HIV/AIDS Services for People with Disabilities in Uganda.

#CrowdMappingU uses mobile technology to receive, collect, share and map HIV/AIDs information for People with Disabilities in Uganda.

Photo of Ashley van Edema

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What problem does your idea solve?

Crowd-mapping addresses two issues in development: (1) lack of data and (2) and lack of voice. We believe that data drives decision-making, and where the data comes from- is as important as where it is delivered. This project combines participatory data collection with mobile technology; amplifying the voice of people with disabilities in Uganda and providing development actors with critical information to reduce disparities in HIV/AIDs services, supports and resources.

Explain your idea

#CrowdMappingU helps to reduce barriers to HIV/AIDs services for people with disabilities (PWDs) by collecting, sharing and mapping resources through the use of mobile technology. In partnership with the National Union of Disabled People Uganda, this project empowers PWDs to make the shift from passive recipients of aid and development assistance to active, action researchers and team members. Using mobile crowd-sourcing technology, inspired by Unicef's successful U-report application, in-country team members will collect, share and map information and resources specific to PWDs with, or at-risk for HIV/AIDs.

The concept and project design respond to a global call for HIV/AIDs action in Uganda and factors in the unique socio-economic and political climate. Unfortunately, despite the fact that people with disabilities are more likely to experience poverty and violence, and less likely to have access to education and community supports- making them more susceptible to HIV/AIDs- their vulnerability has yet to translate into effective, targeted interventions.

The goal is to use mobile technology address reported barriers to access including: stigma & confidentiality; physical accessibility; access to information (including literacy and accessible print sources); shortages of trained/knowledgeable and sensitive medical personnel and lack of fiscal investment/development assistance.

Please see the PAQ and (REVISED) PAQ2 for additional information (attached).

Who benefits?

People with disabilities are at the center of this projects design and implementation, and will ultimately benefit from increases in donor investment that comes with new data; but, knowing that 80% of funding for HIV/AIDS is donor funded- the focus is on collecting information to share with development stakeholders- including donor agencies, NGOs, PWDs, researchers, scholars and policy makers. Check out our PAQ's for more information on beneficiaries.

How is your idea unique?

This project is unique because it combines existing technology and knowledge, to address a global health crisis, which disproportionately impacts the world’s most vulnerable. The project builds off of lessons learned and relationships built- while remaining committed to flexible thinking and a spirit of innovation moving forward.

Traditional advocacy and information sharing models don't account for disability and often lack timely information sharing and feedback processes. The use of technology in our project enables increased access via accessible mobile applications (screen readers, talk-to-text, visuals vs. text, location services) and allows for near-instant sharing of data, information and resources.

Also, we believe that heavy loads become lighter when many people share the weight; our team includes people with disabilities, community members, researchers, scholars and practitioners- each with our own unique experience and background- committed to a shared vision.

Tell us more about you

We are a transdisciplinary group of researchers, advocates, academics and development actors; UNDIPU leads the team, sharing lived-experiences & ensuring that the project design development- facilitated by researchers from The School for Global Inclusion and Social Development at UMass Boston- produces data that -with help from our partners at AidData- will translate into evidence based-reporting to be shared with decision/policy makers to spark positive change for PWDs with HIV/AIDs in Uganda.

What are some of your unanswered questions about the idea?

As our project has evolved, the concept has been strengthened and the scope and reach defined. We know that what sets us apart from traditional research in this area is the blending of technology for data collection/resource sharing and the PWD led, participatory nature of the project. While we have a solid understanding of the what & why behind our proposal recent feedback-driven revisions to the mobile technology calls for further collaboration with a tech-team who can help us with the how- translating the vision to practice. What originated as a (simpler) SMS-based outreach tool, has transformed into something that may be better suited as a mobile-app, and unfortunately our current team lacks the expertise to build this model.

Where will your idea be implemented?

  • Uganda

Experience in Implementation Country(ies)

  • Yes, for more than one year.

Expertise in Sector

  • I've worked in a sector related to my idea for more than a year.

Organizational Status

  • We are a registered non-profit, charity, NGO, or community-based organization.

Idea Maturity

  • Prototyping: I have done some small tests with prospective users to continue developing my idea.

How has your idea changed based on feedback?

Our team is amazed how much you can learn in just two short weeks, major take-aways and improvements include:
1. a shift from categorizing people with HIV/AIDs & Disabilities as passive recipients/participants to active contributors/team members;
2. a transition away from traditional academic research practices (read, hypothesize, recruit, conduct) to a simpler, person centered (ask, listen, act) model;
3. increased focus on reciprocal exchange of information between the project team both in and outside of Uganda with other stakeholders, policy teams and decision makers;
4. flexible approaches to the resource mapping component of the project based on human, technical and fiscal capacity;
5. the acknowledgment that we still have work to do to develop/implement the technology.

Please see the revised user experience map, PAQ2 document and comments section for detailed explanations of the above.

Who will implement this idea?

In our experience, implementation planning is difficult without a concrete knowledge of the fiscal resources available; however, the team at NUDIPU is in constant communication with those at UMass Boston leading the project design. Following the tech development, the goal is to have NUDIPU lead the implementation with support from the UMB team and data/reporting help from partners at AidData.

We are aiming for 10-20 PWDs to pilot the program; working towards a train-the-trainer model.

Using a human-centered design approach, you may uncover insights that lead to small or foundational changes to your organization’s existing strategy or processes in order to unlock the potential of your idea. How would your organization go about making such changes?

For NUDIPU the major difference has been the participatory nature of this process. While they certainly have a wealth of information and lived experience, they do not currently have the technical skills or organizational capacity to develop, apply for or lead this type of initiative; at times this has led to western led interventions that are neither sustainable nor engaging.

For the teams at UMass Boston and AidData, this opportunity has been a welcome departure from traditional grant writing and project planning. The shift from academic methodologies (read, make assumptions, formulate research questions, THEN engage the population) to a HCD inspired Ask-Listen-Act model has helped to inspire innovative approaches to problem solving while also justifying the non-traditional approach.

What is it that most attracted you to Amplify instead of a more traditional funding model?

Flexibility and a spirit of collaborative change encouraged by Amplify were the driving forces behind this application. Working towards true, sustainable social change can sometimes be frustrating; institutional bureaucracy, discipline mandated limitations and the one-and-done approach to applying for funding are catalysts for fear of failure and abandoned ideas. By placing the person or community in the center, our motivations shifted from fiscal to social- inspiring us to innovate freely.

What challenges do your end-users face? (1) What is the biggest challenge that your end-users face on a day-to-day, individual level? (2) What is the biggest systems-level challenge that affects your end-users?

PWDs with HIV/AIDs experience discrimination on multiple levels. Day to day, most are just trying to survive; reporting challenges including: transportation/ access without supports, discriminatory medical practices & lack of confidentiality, economic hardships like lack of food to take with meds, stigma from family/community and inability to understand self-care directions.

The vulnerability of disability and lack of social and economic justice and inclusion are magnified by the stigma of HIV/AIDs; leading to systemic exclusion. For people with disabilities in Uganda, that struggle to meet basic human needs (food, shelter, education, employment) the hurdles often become insurmountable- leading to intrinsic failure to thrive and extrinsic perceptions of lack of human-worth and value.

Tell us about your vision for this project: (1) share one sentence about the impact you would like to see from this project in five years and (2) what is the biggest question you need to answer to get there?

Lack of concrete data on prevalence of HIV/AIDS for PWDs makes assigning numeric benchmarks difficult, however; in this pilot, we aim to demonstrate the efficacy of mobile interventions for improved access and quality of services for PWDs, while also building the capacity of NUDIPU as an umbrella organization, so that #CrowdMappingU may be expanded across regions in Uganda.

How might we expand the mobile technology to identify and measure potential impact on new HIV diagnoses for PWDS?

How long have you and your colleagues been working on this idea together?

  • Between 6 months and 1 year

How many of your team’s paid, full-time staff are currently based in the location where the beneficiaries of your proposed idea live?

  • Under 5 paid, full-time staff

Is your organization registered in the country you intend to implement your idea in?

  • We are registered in all countries where we plan to implement.

My organization's operational budget for 2016 was:

  • Between $50,000 and $100,000 USD

If your team/idea/organization has a website, please share the URL below.

http://nudipu.org
https://www.umb.edu/academics/sgisd
http://aiddata.org
View more

Attachments (5)

#CrowdMappingU-PAQs Round2-Improvements.pdf

We've added a follow-up to our "Previously Asked Questions" to include questions posed by IDEO and an overview of the updates and progress we've made during the improvements phase of the project. Take a look! If you have questions or would like this document in an accessible Word document, please e-mail: Ashley.coates001@umb.edu

#CrowdMappingU- IMPROVED User Experience Map.pdf

Based on the feedback and questions we've received we updated our User Experience Map! If you have questions or would like this document in an accessible Word document, please e-mail: Ashley.coates001@umb.edu

IDEO Crowd-mapping PAQ.pdf

Here is a list of PAQs (Previously Asked Questions) to help clarify or provide more detail on our project. If you still have questions or would like this document in an accessible Word document please e-mail: ashley.coates001@umb.edu

IDEO-Crowd-Mapping Fact Sheet.pdf

One-page fact sheet to help define the problem and illustrate the core components of the project. Please e-mail ashley.coates001@umb.edu for an accessible Word version of the fact sheet.

IDEO Crowd-mapping UserExp.pdf

One-page illustration of the user experience. Includes a graphic representation and narrative description of the user experience. Please e-mail ashley.coates001@umb.edu for an accessible Word version of the fact sheet.

15 comments

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Comment
Photo of Doris Carter
Team

Healing from HIV-AIDS, i never though dr.camala who could ever get my HIV-AIDS cured with his healing spell, i have tried almost everything but i couldn't find any solution on my disease, despite all these happening to me, i always spend alot to buy a HIV drugs from hospital and taking some several medications but no relieve, until one day i was just browsing on the internet when i come across a great post of !Michelle! who truly said that she was been diagnose with HIV and was healed that very week through the help of these great powerful healing spell doctor, sometime i really wonder why people called him Papa camala, i never knew it was all because of the great and perfect work that he has been doing that is causing all this. so i quickly contacted him, and he ask me some few questions and he said a thing i will never forget that anyone who contacted him is ! always getting his or her healing in just 6 hours after doing all he ask you, so i was amazed all the time i heard that from him, so i did all things only to see that at the very day which he said i will be healed, all the strength that has left me before rush back and i becomes very strong and healthy, this disease almost kills my life all because of me, so i will to hospital to give the final test to the disease and the doctor said i am HIV negative, i am very amazed and happy about the healing dr.camala gave to me from the ancient part of Africa, you can email him now for your own healing too at: dr.camalahivadscure@yahoo.com or WhatsApp him +2349055637784 thank you sir for healing me from HIV, i am Doris Carter.

Photo of Farnaz Malik
Team

this is a really great idea for a targeted intervention! people living with HIV/AIDS and people living with disabilities must deal with stigma on a daily basis -- I wonder if you've developed any indicators for how you'll measure #CrowdMappingU's impact on stigma?

Photo of OpenIDEO
Team

Hi Ashley Coates and Team,

We’re excited to share with you feedback and questions from the Amplify team and an external set of experts. We encourage you to think about this feedback as you continue to improve and refine your idea. You are welcome to respond in the comments section and/or to incorporate feedback into the text of your idea. Your idea and all associated comments will all be reviewed during the final review process.

-It is exciting to see technology and crowd-sourcing of data applied to disability work. Policies and interventions regarding the sexual health of PwDS are very limited. UNAIDs policy on disability is extremely limited, for example. So data regarding the number of PwDs trying to access SRHR/ HIV services and the accessibility of those services would be valuable.
-What did you learn in your pilot? What were the outcomes?
-What is the demand for this data and what are their needs? With the objective of improving outcomes for PWDs, do you anticipate needed to push them to use the data and how?
-Does data seem to drive decision making in Uganda or are there other more dominant factors?
-Will the data be open source and/or linked with national databases?
-What led you to focus on HIV resources in particular?
-How have donors/government fed into this initiative’s design? What insights do you have into their decision making which led you to create this solution? What alternatives did you consider?
-To what extent have people with disabilities contributed to project design? How will it meet their needs?
-Practically speaking, how does participating in the survey translate to amplified voice for disabled people?

In case you missed it, check out this Storytelling Toolkit for inspiration for crafting strong and compelling stories: http://ideo.to/DXld5g Storytelling is an incredibly useful tool to articulate an idea and make it come to life for those reading it. Don’t forget - June 4 at 11:59PM PST is your last day to make changes to your idea on the OpenIDEO platform.

Have questions? Email us at amplify@ideo.org

Looking forward to reading more!

Photo of Ashley van Edema
Team

Hi @OpenIDEO team! Thank you for your questions! We've added responses to all of your questions to our revised "Previously Asked Questions" document- but also thought we'd post about our lessons learned here. You can read all of the responses in the PAQ Round 2 document- attached. Thanks for your comments and for helping us to dig deeper! (See the next comment for details).

Our team is amazed how much you can learn in just two short weeks, major take-aways and improvements include:
1. a shift from categorizing people with HIV/AIDs & Disabilities as passive recipients/participants to active contributors/team members;
2. a transition away from traditional academic research practices (read, hypothesize, recruit, conduct) to a simpler, person centered (ask, listen, act) model;
3. increased focus on reciprocal exchange of information between the project team both in and outside of Uganda with other stakeholders, policy teams and decision makers;
4. flexible approaches to the resource mapping component of the project based on human, technical and fiscal capacity;
5. the acknowledgment that we still have work to do to develop/implement the technology.

Photo of Ashley van Edema
Team

1. Early iterations of the #CrowdMappingU project referred to the people with disabilities in our project as “participants”. After additional conversation with the team at The National Union of Disabled Persons of Uganda (NUDIPU) we recognized that those collecting and sharing data on HIV/AIDS services and resources were not simply passive participants or numbers on a spread sheet- they are the heart of this work and deserve to be referred to, treated and compensated as team members.

2. We’ve also transitioned away from the traditional research methodologies in our initial approach to the project design. Prior to the improvement phase of our project, the majority of the information we had collected and used to draft our design came from research publications. As a team comprised of academics and self-proclaimed “data-geeks” we are accustomed to conducting comprehensive literature reviews that guide research question development. Only then, do we typically have the opportunity to dig deeper, asking questions and making connections with individuals and project beneficiaries.

Applying principles of human centered design not only allowed for participant engagement early on- but also, demanded it. We have been able to revise our project using an “Ask, Listen, Act” model. This enables us to give context to the publications we initially relied, while also providing an avenue for us to fill in the gaps as viewed through the eyes of our team in Uganda, as opposed to those determined by the research team in the US.

3. Our initial project design centered on collecting data on HIV/AIDs services for mapping and communication to development actors. With the critical insight from NUDIPU we recognized that by implementing mobile data collection we have the ability to timely share information with people with disabilities, development actors and, with additional proto-typing and partnerships, we can also provide real-time information to the ministry of health and related partners on supply-levels and access to medication etc. (see #5 for additional information).

4. Human Centered Design preaches the importance of flexibility. This has been a critical component for us as we work to ensure that the information we collect is stored and mapped in a way that is accessible and valuable to a variety of stakeholders. We initially planned to piggy-back on AidData’s DREAMS project (collecting and mapping data on HIV/AIDs in Uganda and Zambia), however; we recently learned that they have decided to focus solely on Zambia for now. Rather than view this as a project barrier, we have shifted our approach to consider alternative options and partnerships including early communications with the team at Humanitarian Open Street Mapping and consultations with technology providers regarding mobile app development. While the collaboration and involvement with AidData may have shifted, our relationship with them is ongoing and we are lucky to still consider them partners and resources for data-management, sharing and analysis.

5. Throughout the iterations of this project we have often had the urge to say “okay, we’ve got it, let’s stop there”- but the more research we do on the principles and approaches of design thinking and human centered design- and the more people we talk to about this project- the more we recognize that there is potential to use technology in a way that has not been used before. For example, the earliest drafts of the design focused on using the same or similar SMS technology as that used by Unicef’s U-Report. However, after considering the accessibility challenges of using an existing service we have begun to explore other avenues; including expanding beyond SMS to a mobile application approach. While we recognize that this shift will likely be more timely and costly, the long-term benefits in Uganda and potential to implement this program across the globe- and/or with multiple beneficiary groups- far exceeds initial expectations. Our hope is that by thoughtfully considering the technology now, we will create a user experience that justifies the cost-benefit.

Photo of Kat
Team

Hi Ashley,

This looks like a very interesting idea that would help to increase data and information on a population historically excluded from many aspects of life in Uganda. How will you identify the community of people with disabilities you will target for the mobile survey (and will you differentiate between rural and urban areas)?

Thanks and good luck!
Kat

Photo of Ashley van Edema
Team

Apologies @AmpifyIDEO team! We had some trouble uploading our User Journey/Experience Map- we sent it by e-mail and would love to be able to post it for sharing with the broader community. Please e-mail ashley.coates001@umb.edu for a copy!

Photo of CCBRT
Team

In total agreement that "data drives decision-making". Looking forward to learning more about this initiative!

Photo of Ashley van Edema
Team

Thanks CCBRT! We are lucky to have an amazing partner in AidData- check out this article on similar data collection efforts that is helping to inform and inspire our design: http://aiddata.org/blog/beyond-open-data-in-uganda-how-do-we-make-citizen-feedback-more-actionable

Photo of Sheila Fesko
Team

This is a really interesting proposal and I agree with you on the importance of data in decision making. I would be interested in learning more about how individuals with disabilities will be responsible for management and implementation of the program. I think it would also be interesting to hear your thoughts on how the collected data would then be used to for policy development and practice.

Photo of Ashley van Edema
Team

Thanks Sheila! We appreciate your insight. Part of our project is rooted in building capacity in the DPOs that we are partnering with. Ideally we would love to create a situation where the organizations and individuals can be as independent as possible- meaning that we would work ourselves out of a "job"! We are definitely in the process of figuring out what this might look like and will tackle the details in the improvement phase for sure. As for the policy and practice portion, our partners at AidData have built fantastic relationships with policy makers in Uganda and have demonstrated the value of this type of data collection in their previous work with UReport- you can read about that collaboration and the ways that data facilitates decision making here: http://aiddata.org/blog/beyond-open-data-in-uganda-how-do-we-make-citizen-feedback-more-actionable
Thanks SO much for taking the time to ask important questions and inspire us to think about things from a different perspective!
Best,
Ashley and the #CrowdMappingU team

Photo of Alanna Propst
Team

Have you heard about Young 1ove? This sounds very similar! However, they are focused in Botswana. I love that your focus is on knowledge, which seems to be working really well in other similar situations! Check them out! http://www.young1ove.org

Photo of Ashley van Edema
Team

Alanna, Thank you SO much for the resource! We weren't familiar with this initiative and it's a fantastic resource. I love that we can learn from the work of others!

Photo of Mussa Gunda
Team

Hi Ashley,
This is great how to use technology to acknowledge the issue. Congratulation all the best

Photo of Ashley van Edema
Team

Thank you Mussa! We've gotten some great feedback both on and off-line and we are really exited to put it into practice during the improvement phase! Thanks for your comment :-)