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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.

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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
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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.

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