“Knowledge is power.” How can we innovate to make this true in humanitarian action?
By: Sophie Van Eetvelt
Tags: Older People, Disability, Innovation, Data, Humanitarian

What is the role of data collection and inclusion (or exclusion) in the humanitarian sector?

People with disabilities and older people are disproportionately affected by crises around the world (ADCAP, 2018; HelpAge, 2018).

In humanitarian settings, they can be excluded from receiving assistance and from decision making because of a number of barriers found in society, in organisations and institutions, and in legal frameworks.

At the Humanitarian Innovation Fund, we believe that innovation can play an important role in making humanitarian action more inclusive. But where do we start?

Is knowledge power?

There is a commonly-used phrase, ‘knowledge is power’. A quick Google search will tell you that the origins of the phrase are uncertain; possibly said by the English philosopher and statesman, Sir Francis Bacon, or possibly not.

It will also tell you that that many people fundamentally disagree with this phrase; because knowledge is only power if you have the agency to take action, or to influence the actions of others.

In humanitarian crises, knowledge comes from a wide range of places. It is carried by and between individuals and organisations, communities and governments, and within countless reports and case studies.

Yet there are large gaps in the fabric of our knowledge, which can mean that humanitarian assistance is inappropriate for or does not reach those who need it.

Cover of the second part of the ‘Gap Analysis: the Inclusion of People with Disability and Older People in Humanitarian Response’

One of these gaps is around the inclusion of people with disabilities and older people.

To understand this better, we published a Gap Analysis in 2020, led by the Nossal Institute at the University of Melbourne.

By reviewing thousands of sources of academic and ‘grey’ literature, we saw some stark trends emerge in what we know; namely, that while there has been undoubtable progress made in raising awareness of the inclusion of older people and people with disabilities in humanitarian action (Robinson et al., 2020), exclusion and discrimination are still commonplace. There is little evidence of commitments and guidance translating into practice.

Figure 1 shows the spread of evidence on disability across the nine Humanitarian Inclusion Standards and by humanitarian sector. The boxes that contain no colours and numbers are where no evidence was found.

It’s clear that across the board the evidence base is thin.

Figure 1: Mapping of evidence found on disability inclusion in humanitarian response by Humanitarian Inclusion Standards and sectors. Numbers and colours refer to the individual articles found in a grey and academic literature review. See more detail in section 4 of the 2020 Elrha Gap Analysis.

The data status quo

Let’s think of data as one of the building blocks of knowledge, and explore some of the key issues relating to data in humanitarian settings.

A large volume of data is collected, for example through rapid assessments, during registration processes, via feedback mechanisms and from monitoring and evaluation activities.

In recent years, there has been an increased awareness of the need for data that is disaggregated by characteristics such as gender, age and disability. However, there is limited evidence of disaggregated data being collected on a large scale and used to increase the inclusion of people with disabilities and older people (Robinson et al., 2020; Collinson, 2020; HelpAge International, 2020).

Additionally, data is rarely disaggregated by age categories (eg, 60–70 years, 70–80 years), meaning that the diversity of older people goes unrecognised. There is also little evidence of any consideration for how older age and disability intersect with each other and with other identity characteristics, such as gender, ethnicity and religion (Robinson et al., 2020).

An even starker gap is the lack of qualitative data, such as data on people’s experiences and the individual factors that affect inclusion. The Inter-Agency Standing Committee (IASC) guidelines recommend collecting qualitative data on the risks and barriers to access faced by older people and people with disabilities, and the specific needs, roles and capacities of individuals.

Where data is collected, too often there is no clear objective in mind. Effective and responsible data collection should be done purposefully and analysed to inform decision-making and the planning, implementation and improvement of humanitarian programmes. As found by our gap analysis:

“The collection of data does not in itself lead to change”

In this case, knowledge is only power if it goes on to enact positive change.

Data collection and inclusion (or exclusion)

Some of the most common methods used to collect data, such as key informant interviews and surveys, can pose barriers to participation, create unhelpful power dynamics, and be time- and resource-intensive (Leresche et al., 2020).

There has been some use of alternative and innovative data collection approaches in the humanitarian sector (ALNAP, 2019; Pivotal, 2017; GSMA, 2020). However, these approaches are not widely used or implemented specifically with older people or people with disabilities.

There has also been little collaboration between humanitarian and representative organisations, namely organisations for people with disabilities (OPDs) and older people’s organisations (OPAs).

OPDs and OPAs have unique knowledge about the experiences of people with disabilities and older people, and about the diverse characteristics of individuals. However, there are few opportunities for relationship-building, exchange and coordination between OPAs, OPDs and other humanitarian actors (Robinson et al., 2020).

A recent survey by the International Disability Alliance (IDA) found that:

“OPDs are increasingly invited to sit at the table, but not yet to participate meaningfully in decision-making processes”, and that “involvement is more often in project activities than in the planning, governance or budget decisions.”

What change is needed?

Based on conversations with a range of people in the humanitarian community, we feel there are two key areas where innovation has potential to increase inclusion, as well as some important cross-cutting principles to put into practice.

Firstly, we should borrow tools from the ‘design thinking’ approaches often used in innovation processes. Methods such as ‘community-centred design’, ‘human-centred design’ or ‘user-centred design’ all aim to create solutions that work well according to the people who will be using them.

They are used to rapidly collect targeted data in order to avoid designing something that requires people to adapt or change in some way, or else be excluded.

When these methods are applied well, the result can be an inclusive design process and solutions that are driven by what the data says, and ultimately humanitarian aid that is more appropriate for and popular with communities affected by crises (Sandison, 2019).

Secondly, we need innovative ways to ensure that data collected is used to increase inclusion in a specific humanitarian programme or activity, and not as an end in itself.

A core principle of innovation is to know your problem(s) well, and to adapt your approach to respond to the problem(s) rather than trying a generic new solution.

Effective data collection requires the data needs of a team or project to be clearly defined before finalising and implementing the approach. This includes understanding the audience and structures you are trying to influence, and being creative in how you analyse, present and communicate what you find.

But these two areas on their own won’t be enough to guarantee positive change for people with disabilities and older people affected by crises. Overarching principles of ‘meaningful participation’ and ‘data responsibility’ need to be upheld.

The Humanitarian Inclusion Standards (HIS) emphasise meaningful participation as a core element of inclusion. We have previously defined meaningful participation as:

“People with disabilities and older people are able to participate fully and effectively in decision-making and in the processes for designing, developing, implementing, monitoring and evaluating humanitarian programmes, policies and interventions, as relevant. It should result in participation being an individual choice not limited by barriers including cultural, identity, attitudinal, physical, communication or legal/policy barriers.”

Working in collaboration with OPDs and OPAs is a vital starting point in putting meaningful participation into practice (CBM Global, 2021). Ensuring that OPDs and OPAs are included in, and actively shape, approaches to data collection and analysis is essential to increasing inclusion across humanitarian action.

On data responsibility, the Centre for Humanitarian Data explains that “Irresponsible or inappropriate processing of data in humanitarian contexts can place already vulnerable people and communities at greater risk of harm or exploitation, e.g. by exposing their location or identifying a key vulnerability”. Therefore, the autonomy and safety of all participants and data contributors must be central to any data collection approach, including how data is managed during the project and in the future, and whether it could be shared with other humanitarian actors and coordinators. The recently-published IASC Operational Guidance on Data Responsibility in Humanitarian Action provides further helpful information.

A commitment to better approaches to data

Knowledge can be power. If we commit to collect data in innovative ways that are designed with people with disabilities and older people, we will build knowledge that is representative and inclusive.

We must also commit to collect such data in a responsible way, and with a clear purpose in mind. This way we can be surer that our knowledge is used to take positive action or influence the actions of others.

So perhaps we should bring in another cliché phrase here: “with great power comes great responsibility”. We’ll have to go back to Google to see who coined that one…