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Testing what works: disability inclusion in eye health services

Sightsavers aims to develop an innovative and cost-effective model to make eye health services inclusive for people with disabilities

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What problem does your idea solve?

People with disabilities face many obstacles in accessing healthcare, including prohibitive costs, limited availability of services, infrastructural barriers, inadequate skills of health workers, stigma and lack of inclusive policies. According to WHO 80% of all causes of visual impairment are preventable or treatable. Sightsavers mission is to eliminate avoidable blindness in developing countries and we want to test a new approach to make eye care services inclusive for people with disabilities

Explain your idea

Over the past 16 months we have piloted an innovative Inclusive Eye Health approach in Bhopal, India. This initiative focused on addressing barriers experienced by people with disabilities living in urban informal settlements in accessing healthcare. We trained health workers on disability inclusion, organised awareness raising activities in the community, and networked with local stakeholders who provide services for people with disabilities and other marginalised groups. We conducted targeted outreach screening camps, providing free eye care services to thousands of people with disabilities who may not ordinarily have been reached by those services. We conducted accessibility audits of all our health facilities and worked with partners to remove infrastructural and communication barriers, and we measured the prevalence of people with disabilities accessing our services using the Washington Group Short Set of questions. We also held regular meetings with the local government to prompt collaboration, share our learnings, and support them in the implementation of inclusive policies. Through this process we developed several tools, including an innovative and comprehensive Inclusive Eye Health Blueprint. We want to further test and refine these tools in a very different setting, and have identified our eye health programme in Nampula, Mozambique. Here we have a strong local country office and collaborative partners that will help us consolidate our Inclusive Eye Health model.

Who benefits?

People with disabilities living in the Nampula province, Mozambique, will be the direct beneficiaries of our project. However, experience from our pilot in India shows that programmes designed to be inclusive for people with disabilities also benefit other marginalised groups, such as people with HIV/AIDS. The families of those individuals receiving eye health services will also benefit, as we know that sight loss has a direct impact on an individual’s ability to contribute to the household.

How is your idea unique?

Our idea is unique as we aim to test and consolidate a practical, efficient and cost-effective approach to embed inclusion in mainstream health programmes in developing countries, bridging the gap between theory and practice. The Inclusive Eye Health Blueprint developed during our pilot initiative in India defines 10 key domains of intervention and a standard set of activities for each domain, along with a pool of outcome and output-level indicators, means of verification, timeframes and budget recommendations. This is a unique and innovative approach, as it maps all the components of standard eye health programmes in developing countries and describes practical steps to make them more inclusive and measure change. With support from Open IDEO and DFID, we will be able to deliver more inclusive eye care services for people with disabilities in Mozambique, and to consolidate our inclusive model, share learnings with the development sector and contribute to the achievement of the SDGs.

Tell us more about you

Sightsavers is an international organisation working with partners in over 30 countries to eliminate avoidable blindness and promote the rights of people with disabilities. In 2016 we performed 12 million eye examinations and over 344,000 surgeries. We’ve been working in Nampula since 2007, supporting the Ministry of Health to deliver quality eye healthcare, improve health infrastructure and increase the capacity of health workers. In 2016 we screened 84,796 people and performed 2,050 surgeries.

What are some of your unanswered questions about the idea?

We developed our Inclusive Eye Health approach in an urban setting in India. We want to know whether it can be applied elsewhere, such as a rural programme in East Africa, to validate its utility in different regions so that it can be scaled up to all our programmes. We are also still exploring how to best demonstrate that our Inclusive Eye Health approach is cost effective and ensures efficiency, quality of service and value for money. Testing and monitoring new approaches requires economic investments, time, technical expertise and human resources. Support from Open IDEO and DFID will help us develop the most suitable strategy to adapt and consolidate our model and tools, and to help other stakeholders benefit from our learnings.

Where will your idea be implemented?

  • Mozambique

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

  • Early Growth/Roll-out/Scaling: I have completed a pilot and am ready or in the process of expanding.

How has your idea changed based on feedback?

We held single-sex focus group discussion (FGDs) with DPO members in Nampula, and consultations with the Eye Health Department at Nampula Central Hospital and the team of ACAMO, a leading national DPO. All welcomed our idea, and provided practical suggestions to improve it. Several participants of the FGDs recommended using radio programmes to raise awareness; they also highlighted the need to address language barriers, as many people with disabilities lack formal education and don’t speak Portuguese. These recommendations will be incorporated in our information, education and communication (IEC) strategy. Some participants also suggested including a module on disability in the training curriculum of nurses and doctors. This activity is currently beyond the remit of Sightsavers’ standard eye health programmes; nonetheless, we recognise its value and we will try to leverage the Inclusive Eye Health initiative to advocate for the inclusion of disability in the training curricula.

Who will implement this idea?

Sightsavers Mozambique will coordinate the project, supported by technical teams in UK, Ethiopia, Kenya and Zambia. We will partner with the Ministry of Health and the Eye Health Department at Nampula Central Hospital. 55 staff members in five districts will be involved in the project. We will coordinate inclusion activities with the Ministry of Social Welfare and in partnership with people with disabilities members of ACAMO; this will involve 4 full-time staff and 2 volunteers in each district.

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?

Sightsavers’ large-scale projects normally require approval from strategic decision-makers in different teams and final sign-off from senior managers. However, the idea we submitted to the Amplify Challenge is coordinated by an internal Inclusive Health Task Team comprising global and country office staff with different areas of programmatic and operational expertise. The Task Team aims to facilitate the embedding of inclusion in our health programmes through a coherent and strategic approach, and meets regularly to reflect on learnings and coordinate actions. Our first pilot was developed through an iterative process, and we now have a working hypothesis on how to make our programmes more inclusive. Hence we are in learning mode, and we are excited to discover what works and what doesn’t.

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

Our idea is innovative in nature, and can have a significant impact on the work of Sightsavers and other organisations, but it is still a prototype which requires further testing. Traditional funding models focus on the end result, rather than the process, and leave minimum room for experimentation and learning from failure. Amplify, on the other hand, celebrates creativity, innovation, learning by doing and collaboration, and we felt it was the perfect model to test and refine our approach.

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?

We held focus group discussions with representatives of DPOs and disability organisations working in Nampula. They shared that the biggest challenges faced by people with disabilities on a daily basis when accessing health services are the negative attitude of health providers and inaccessible infrastructure. Participants also mentioned that women with disabilities face more stigma then their male counterparts, particularly in accessing sexual and reproductive healthcare. According to the participants, there are inclusive policies in Mozambique, but the biggest systemic challenge remains their implementation. For example, there are provisions for free medicines for people with disability cards, but in reality people with disabilities are often unable to access these products for free.

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?

IMPACT: By 2022, we aim to scale our inclusive approach to all Sightsavers’ programmes, reaching 1.8 million people with disabilities every year with eye health services in 30 countries, and to influence governments and other stakeholders to use our model and tools within health programmes in developing countries. QUESTION: How do we refine our model to ensure flexibility and replicability across different regions and health programmes, demonstrating efficiency, quality and value for money?

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

  • Between 1 and 2 years

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

  • Between 5-10 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:

  • Above $1,000,000 USD

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

Website: https://www.sightsavers.org/ Inclusive health webpage: https://www.sightsavers.org/inclusive-health/
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Attachments (2)

Paper Sightsavers - UD2016 Japan final.docx

Paper submitted to the 6th International Conference for Universal Design, International Association for Universal Design (IAUD), Nagoya, Japan, 9 – 11 December 2016. Title: "Universal design and inclusive eye health: a pilot initiative in Bhopal (India)". Authors: Andrea Pregel, Tracy Vaughan Gough, Sandeep Buttan, Archana Bhambal, Jayashree Kumar.

Submission 51 - UD2016 UK - Sightsavers Final.docx

Paper submitted to the 3rd International Universal Design Conference, University of York, UK, 21 – 24 August 2016. Title: "Ensuring universal access to eye health in urban slums in the Global South: the case of Bhopal (India)". Authors: Andrea Pregel, Tracy Vaughan Gough, Emma Jolley, Sandeep Buttan, Archana Bhambal.

11 comments

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Spam
Photo of Rajeev
Team

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Spam
Photo of OpenIDEO
Team

Hi Sightsavers 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.

General feedback from experts:
One expert share, this idea has the potential to scale and benefit multiple communities across countries and cultures!

Another shared: Eye health is a major challenge and issue. The ‘packaged’ approach of integrating eye health into mainstream health services is a bold idea!

What experts shared for is this idea desirable, feasible and viable?
• Desirable: absolutely - a step towards reducing the 80% preventable visual impairment number is desirable!
• Feasible: this seems very feasible given the organization's experience in India. However, as mentioned, the health system in rural Tanzania might be structured differently. That could emerge as a challenge (e.g. people don't access clinics as much, more outreach required).
• Viable: Some questions to think about, How will you scale this idea? What needs to be accounted for when considering how countries have uniquely structured health care? What measures are in place to increase cost effectiveness?

How does this idea consider user needs?
• User needs are well considered in the Indian. We’d love to learn how you are planning for the new context of other countries, especially, if CHWs will be used in more rural areas for outreach and screening?

Some questions to think about:
• What have you learned to do differently as a resulting of testing this elsewhere?
• Is the team thinking of expanding this model to other areas? Is the team thinking about other partnerships?
• How are you measuring your impact?

Thanks for sharing the important work you are doing!

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!

Spam
Photo of Sightsavers
Team

Hello Amplify team! :-)

Thank you for the great feedback, and thanks to the experts who reviewed our idea! Please find below the answers to your questions.

• [How will you scale this idea?]
Our long-term vision for Inclusive Health is three-fold. First, we want to embed inclusion in all our eye health programmes in 30 countries across South Asia and Sub-Saharan Africa. Second, we want to test and replicate our inclusive approach within our Neglected Tropical Diseases (NTDs) programmes and explore its feasibility in other types of health programmes. And finally, we want to influence other stakeholders, such as governments, multilateral organisations, national and international NGOs, to embed inclusion within their health programmes in developing countries.
In order for this to happen, we need to develop simple, practical, flexible and cost-effective procedures and tools that can be used in a wide variety of programmes and settings. The Inclusive Eye Health Blueprint and the associated tools that we produced in Bhopal and that will be tested in Nampula serve exactly this purpose. Once these tools will be refined, we will us them internally within our programmes, and we will share them with external stakeholders to contribute to the development of more inclusive health programmes in the Global South, in line with SDGs.

• [What needs to be accounted for when considering how countries have uniquely structured health care?]
While the private sector plays an important role in India, the majority of health services in Mozambique and most African countries are government-led. Sightsavers has a well-established partnership with the Ministry of Health in Mozambique, and we already provide eye care services via the Nampula Central Hospital and associated primary health units in various districts. For these reasons, we are in a good position to test our innovative inclusive model, and to support the government in embedding a more inclusive approach within the national health system.

• [What measures are in place to increase cost effectiveness?]
Our Inclusive Eye Health approach is informed by universal design principles, and we look at inclusion as an integral aspect of quality healthcare services, rather than an add-on feature. Retrofitting can be very expensive, but factoring in inclusion and accessibility at the design stage can be highly cost-effective. For example, the production of information, education and communication (IEC) materials is a standard component of healthcare programmes, but accessibility is rarely considered at the design stage. Our goal is to identify best practices and accessible solutions by consulting with people with disabilities and other stakeholders, to ensure the IEC strategy meets their needs and reaches everyone in the community. This approach can be highly cost-effective, as it simply consists in adapting an existing process to make it more inclusive.
At the same time, we are also aware that some additional activities may be required, such as accessibility audits and infrastructural interventions. Our Inclusive Eye Health Blueprint maps all the steps required to complete these activities, and provides a range of different approaches that could be adopted in different settings, including information on estimated costs based on our experience so far.
Initial evidence from our Bhopal pilot suggests that embedding inclusion in eye health should cost between 5% and 7% more compared to standard programmes. However, more evidence is required and our research team is planning a series of costing studies to understand the cost of inclusion in health programmes: these will inform our Inclusive Eye Health strategy going forward, and will generate evidence on the value for money of inclusion in the context of the SDGs.

[continues in following comment]

Spam
Photo of Sightsavers
Team

[continues from previous comment]

• [User needs are well considered in the Indian. We’d love to learn how you are planning for the new context of other countries, especially, if CHWs will be used in more rural areas for outreach and screening?]
Participation is one of the fundamental principles of our inclusive model. For this reason, we will work in partnership with the government and a leading national DPO, and we will hold regular consultations with people with disabilities, women, and other groups of individuals who may experience barriers in accessing healthcare. We will conduct focus group discussions, community meetings, key informant interviews and exit interviews with patients to monitor our progress and embed a human-centered design approach in our project.
CHWs already play a fundamental role in our eye health programmes, particularly in mobilising people living in rural areas to attend eye screenings and take up referrals for eye surgeries. As part of the Inclusive Eye Health initiative, we will build capacity of CHWs around gender mainstreaming and disability inclusion, and we will work with them to identify and provide services to the most marginalised individuals in each community.

• [What have you learned to do differently as a resulting of testing this elsewhere?]
In Bhopal we collected data disaggregated by disability using the Washington Group Short Set of questions (WGSS) with all patients accessing different facilities and outreach camps. This methodology proved to be extremely useful, as it allowed us to test the WGSS in our eye health project, and to collect and analyse a large amount of data. However, while feasible, this approach can also be expensive and time-consuming. Therefore, in Mozambique we would like to test a different method, collecting disaggregated data by disability at different stages of project implementation. Through this new approach we aim to collect enough quality data to measure progress and inform our inclusive strategy, but also to demonstrate a more feasible and manageable approach to embed the WGSS within health programmes in Mozambique and, more generally, in East Africa.

• [Is the team thinking of expanding this model to other areas? Is the team thinking about other partnerships?]
We are very keen to test our approach in different areas, and we are planning to apply this inclusive methodology to our NTD programmes, which mainly focus on mass drug administration in rural areas. Additionally, we are currently finalising a partnership with another international NGO to test our model and tools within their sexual and reproductive health programmes in Africa in 2018. This collaboration will provide a fresh and critical perspective on our approach, and will illustrate to what degree our model can be replicated in different areas.

• [How are you measuring your impact?]
We will develop a monitoring and evaluation framework comprising an M&E plan, tools and procedures. The M&E plan outlines indicator definitions, disaggregation, formulas, methodology, frequency and roles and responsibilities for data collection, collation and reporting. This will be stored on our centralised project management system, and every quarter the country office will enter data and attend oversight meetings on project performance with our global teams. A baseline study will be carried out at the beginning of the project to establish indicator baseline values, using our Quality Assessment Tool (QSAT), the Washington Group questionnaire and the Equity Tool. The endline study will use the same tools to ensure comparability of findings. A learning review will be conducted at the end of the project to identify what has worked well and where we faced challenges. Exit interviews with patients, consultations with people with disabilities and other groups of individuals, and review meetings with our government and DPO partners will be carried out throughout the project to ensure a participatory approach.

Thank you once again for the great feedback and questions, and for giving us a chance to bring our Inclusive Health work to the next level!
Sightsavers Team

Spam
Photo of Stephan Hitchins
Team

Exciting work here. Not sure if you have come across the Index Awards where there are companies and individuals working along similar lines to yourselves. Here are a few links that may be useful.

http://designtoimprovelife.dk/touch-sight/
Touch Sight provides the visually-impaired with an opportunity to “see” images on an advanced Braille interface that displays images as embossed surfaces that the user can touch. It also records sound for three seconds after pressing the shutter button allowing the user to use the sound as a reference when reviewing and managing the photos.

http://designtoimprovelife.dk/be-my-eyes-app-crowdsources-vision-for-the-blind/
Sometimes all you need to do to find assistance is let someone know you need it. That’s exactly the principle behind Be My Eyes, the app that connects sighted people who can lend their eyes to the blind in times of need.
Imagine the frustration of being blind and needing to view something as basic as allergen information on a food label, or select the correct can from the pantry. Little things like this that the sighted don’t give a second thought to can add a lot of hassle to the day of a blind person. Now, with just a tap, the blind can ask sighted volunteers via the Be My Eyes app to eliminate the complication.

The sighted person simply takes a look using live video chat, describes what it is they see to the non-seeing person, and then both move on with their day effortlessly. It works very similarly to taxi apps; people in need are matched with people available to help at the time of the request. Essentially, Be My Eyes is crowdsourcing vision for the blind.

http://designtoimprovelife.dk/the-voice/
The vOICe design provides the blind user with live visual input from a head-mounted camera by capturing and converting this live video on-the-fly into closely corresponding “visual sounds” that convey the visual content. The blind user learns to mentally interpret the complex sounds as visual views.

Spam
Photo of Sightsavers
Team

Dear Stephan,

Thanks a lot for sharing. It’s quite exciting to see the incredible transformative power of new technologies, and how they can improve the lives of people with disabilities.

Considering that 80% of people with disabilities live in developing countries, one of the key challenges remains to develop assistive technology which can be afforded by people livening in some of the poorest regions of the planet. In Bhopal, for instance, our project focuses on people with disabilities living in urban slums, and it would probably not be sustainable to embed many of these technologies within our programmes.

However, we are very open to innovation and we are keen to experiment innovative and cost-effective solutions, so feel free to get in touch with us or share here other potential ideas.

A very successful example of technology embedded in Sightsavers’ work is the Global Trachoma Mapping Project, which saw surveyors collect and transmit data from 2.6 million people in 29 countries using Android smartphones. You can find more info here: https://www.sightsavers.org/gtmp/

Thank you once again for engaging!

Spam
Photo of CCBRT
Team

Being an eye healthcare service provider and disability organisation promoting inclusion, CCBRT is very interested in this idea. Could you share a link to the Inclusive Eye Health Blueprint?

Spam
Photo of Sightsavers
Team

Hello!

Right now we are still in the development phase of the IEH Blueprint, and we plan to test it and refine it through this project, after which we'll be able to share it. In the meanwhile you can check our inclusive health webpage: http://www.sightsavers.org/inclusive-health/

Also, please get in touch with our Tanzania country office - it would make a lot of sense for our organisations to collaborate, and there may be opportunities to test together this approach going forward.

Spam
Photo of Maria Omare
Team

This is a very well thought out idea serving a greatly marginalized population. Eye health is an area that is often overlooked and it's wonderful that you are working to change this.
In what way is are the project's direct and indirect beneficiaries involved in the project design and implementation?
All the best!

Spam
Photo of Alicia O&amp;#039;Brien
Team

I think it is well explained, not too length (in today's worls we don't seem to have tome for more than short bits of information.  My very personal preference when it comes to a font is Arial as it is very clear.  Alicia O'Brien  

Spam
Photo of Sightsavers
Team

Hi Alicia, thanks for your feedback on our idea. The font is predefined by the platform, but yours is a good tip; many users with dyslexia prefer sans-serif fonts. Maybe we can suggest it to OpenIDEO for the future :)