Ethics and data collection in the humanitarian context

In emergencies, data collected can be used to inform action and improve the quality, efficiency or impact of the response. The assessment of the impact and performance of humanitarian organizations is evolving. There is pressure to enhance the effectiveness and authenticity of humanitarian projects. Specifically, measuring the impact is crucial and humanitarians are expected to react in a certain way to the existing need. Various factors affect the ethical experience of those involved in data collection in such settings and additionally, the kinds of relationships they can be involved in. Ethics and relationships matter in these settings for they can affect the capacity of the individuals who gather data to ensure their human subjects are protected and their well-being is promoted (R. F. Boulanger). Interest for data collection in humanitarian projects is associated with the talk on accountability.

As discussions on how effective and legitimate humanitarian projects keep rising, evaluation can only be possible through data collection involving human subjects (H. Slim). Data collection serves the ethically vital role of avoiding some of the “escapable cruelties of the humanitarian predicament” that result from technical shortcomings or unprofessionalism (A. de Waal). However, with data collection being pivotal in humanitarian interventions, it is necessary to be cautious against the consequences of introducing “deeply unrealistic measures and systems of quality, improvement, and accountability into agencies and contexts which simply cannot absorb them, handle them or benefit from them” (H. Slim).

But not all data collection in humanitarian settings is collected with the unequivocally aim to save lives and relieve suffering (Hunt M.R. et al). Sometimes, it might fit more broadly within the purview of academic and/or health research (Kayabu B. et al ). On the other hand, some of the data may also not be relevant as research, making it ineligible for publication. As a result, it is difficult to have a clear picture of data collected in humanitarian projects hence leaving many questions ambiguous.

Challenges of data collection in humanitarian settings

The challenges that data collectors in humanitarian settings face could differ significantly from those working in more traditional settings. Data collection in humanitarian interventions is often carried out with a technical focus, that will result in future plans that are thought to be the answer to future problems. The general challenges of data collection are additionally influenced by the nature of the conflict or disaster, which is often complicated, continuously changing and restricted. This makes the dynamics to vary extensively from one setting to the another, which in turn influences the rate of responsiveness of individuals in these communities.

“Although the humanitarian community acknowledges the need for good quality data in programme design and monitoring, the challenges and demands of field settings have too often led to the argument that “we just don’t have time” or “it is too difficult”. Yet without the allocation
of time and resources to the collection of baseline and monitoring data, project activities cannot be grounded in strong evidence from programme evaluation.”-Jennifer Schlecht and Sara Casey

Given the limited resources in an emergency, it is only ethical to collect data that can be used for action. Activities are always time-sensitive and may include prioritizing needs and gaps, mobilizing available efforts and resources, coordinating response efforts to minimize duplication of efforts, advocating for resources, or monitoring interventions. Due to these factors and the complex nature of disaster settings, data collectors face various challenges that may affect the quality of data collected such as:

Difficulty obtaining informed consent
Informed consent is one of the most common and important ethical challenges in disasters. World Medical Association Statement on Medical Ethics in the Event of Disasters (1994) states that in a disaster response, it should be recognized that there may not be enough time for informed consent to be a realistic possibility (World Medical Association).

Despite the fact that healthcare workers in disaster relief are expected to make every effort to save lives and alleviate suffering, some victims might refuse treatment. Some victims may also refuse to give information to the data collectors. There are situations where the data collectors may feel that they are in a position to help the victims and overlook obtaining informed consent.
Barnett wrote about humanitarian relationships that data collectors active in such settings should be careful (Barnett M.). Barnett believes that we will probably not think about issues of consent in the event that we feel responsible of the welfare of others and when we are convinced of our ability to better their lives which may result to data collectors foregoing informed consent (Barnett M.).

Difficulty sampling the affected population
Sampling the affected population in disaster settings can be a difficult task mainly due to the high mobility of these population resulting in unavailability of reliable numbers in such settings. Populations change routinely, people move out of camps and into resettlement areas. As a result, data collectors find it challenging to maintain a reliable list of the population (J. Schlecht and S. Casey)

False data from respondents
Some respondents might provide false data in order to get more or faster assistance. Occasionally, there might be other organizations in the field gathering data and making promises to assist respondents without fulfilling them. This may lead to a lack of credibility and trust forcing some respondents to refuse to cooperate or to provide accurate data.

Surveillance
This is done through longitudinal data collection which allows tracking of trends and monitoring changes among the affected population. In such settings, where there are a lot of different healthcare providers working with different organizations, it can be challenging to standardize the way provider's report. Another challenge is that most surveillance systems are passive, reducing completeness and data quality (Institute of Medicine, US). They only capture data from cases that present to a health facility. Those who are unable to seek care in these facilities are not be included and this generally, reduces the sensitivity of the data. Also, the data may not be representative of the targeted population.

How electronic data capture helps improve data collection in the humanitarian context
Instead of doing paper-based surveys or spreadsheets, as it is commonly done in the field, data collection can be completed using mobile devices including phones and tablets. This allows for data validation on entry ensuring the data collected is consistent. It is also fundamental to ensure the safety of the human subjects involved. One way is by ensuring the confidentiality and privacy of the respondents are maintained at all times. When using paper-based or spreadsheets surveys, data can easily be accessed by unauthorized parties causing a safety breach of the data collected. Data can also be easily lost or misplaced during manual transportation of the paper forms.

Electronic data capture improves the integrity and safety of the data. When data is collected using electronic data capture, the identities of the respondents are protected using unique identifiers and the information is kept safe through passwords and encryption. Additionally, collaboration among data collectors and other stakeholders can be possible and in real time. Through collaboration, longitudinal surveillance can be more efficient and help improve the outcomes and future actions of humanitarian interventions.

There are several reasons why using paper-based surveys or spreadsheets may not be recommended in such situations. It is explained in detail in these links:
https://www.teamscope.co/blog/why-it-is-time-for-researchers-to-give-up-paper-based-crfs

https://www.teamscope.co/blog/the-main-challenges-of-using-spreadsheets-and-online-surveys-for-clinical-research

Teamscope can be used to ensure data collected is valid, secure and enables effective monitoring of the affected populations in disaster settings.

URL: https://www.teamscope.co/

References
Barnett M. Empire of Humanity: A History of Humanitarianism. Ithaca: Cornell
University Press; 2011. 296 p.
Boulanger RF. Ethics in humanitarian research: Insights on the experience of researchers.McGill University, Montréal 2015
de Waal A. The humanitarians’ tragedy : escapable and inescapable cruelties. Disasters.
2010;34(S2):130–7.
Hunt MR, Anderson J, Boulanger RF. Ethical implications of diversity in disaster
research. Am J Disaster Med. 2012;7(3):211–21.
Institute of Medicine (US) Committee on a National Surveillance System for Cardiovascular and Select Chronic Diseases. A Nationwide Framework for Surveillance of Cardiovascular and Chronic Lung Diseases. Washington (DC): National Academies Press (US); 2011. 5, Existing Surveillance Data Sources and Systems. Available from: https://www.ncbi.nlm.nih.gov/books/NBK83157/
Jennifer Schlecht and Sara Casey. Reproductive Health Access, Information, and Services in Emergencies
Kayabu B, Allen C, Clarke M. Evidence Aid 2011 Annual Report. 2012.
Slim H. Essays in Humanitarian Action. eBook. Oxford: Oxford Institute of Ethics, Law
and Armed Conflict; 2012.
World Medical Association. WMA General Assembly. Pilanesberg: South Africa; Oct 2006. [cited 2011 May 11]. Statement on Medical Ethics in the Event of Disasters. Updated version. Available from: http://www.wma.net/en/30publications/10policies/d7/index.html.

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