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Organising and running a research study

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In this step, we’ll give an overview of the key aspects of organising and delivering a research study. Many of these topics will be covered in more detail in future steps. The first step in designing a study is deciding on a research question. A research question defines the scope of the study, what you answer through your project. To define your research question, you should start by thinking through the following– what is of interest to you, decision makers, and to those affected? Consult with relevant groups to get their input. What is new and relevant? Will the research question further our understanding of disability? We want to pick research questions that haven’t already been explored.
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To determine whether your research question is new and relevant, you will need to look at current research on the topic. We will discuss evidence synthesis, for example, systematic reviews, later this week. What is feasible? Can I answer this question with the resources and time available? Research objectives are developed based on your research questions. Often, more than one objective is used to address one research question. When developing your objectives, you should ensure that they are SMART. These are objectives that are specific, measurable, achievable, relevant, and timely. Once you’ve decided on your research questions and objectives, you can design the research study. The methods used in your study should align to answer your research questions and objectives.
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Your research might focus only on quantitative methods or qualitative methods, or mixed methods, which uses both quantitative and qualitative approaches. You’ll hear more about these methods later this week. Once you have your research question, you can start writing a research proposal. A research proposal outlines in detail how you plan to conduct your research. When developing a proposal, involve partners from the study’s setting, such as disabled people’s organisations and government actors, to ensure that your study aims and methods are appropriate to the context you are working in. The proposal will normally consist of the following sections. Background– our current understanding of the research topic and the study’s setting. Rationale– why this research study is needed.
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Aims and objectives– what the research study intends to achieve. Methodology– how will the study be conducted to answer the research aims? They should include how you plan to collect and analyse the data. Ethics– what ethical issues may arise from the study, and how will they be managed? Timelines– when will the different elements of the study be completed? You want to consider activities involved in set-up, data collection, analysis, and write-up. Budget– how will different components of the study cost, including star salaries, ethics fees, training costs, equipment, transport, and dissemination costs, such as for publications and presenting at conferences? Accessibility considerations such as sign language interpretation or accessibility formatting should also be included.
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Dissemination– it’s important to develop a dissemination plan from the outset. This should identify how you will engage and share the study’s progress and results with stakeholders.
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Whilst developing your dissemination plan, you should conduct a stakeholder analysis. This involves listing the stakeholders who have power and influence over the issue you are exploring. This may include people with a disability, carers, community members, traditional leaders, NGOs, the private sector, and government officials, as well as regional bodies, such as the World Health Organisation. It’s important to know the audience for your research and the types of policies and practises that are as important in terms or influence with the research findings. This will maximise the impact of your study, and ensure that it is useful. Once you have an idea for your research study, you can start looking for appropriate sources of funding.
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Your Organisation might have existing funding streams for research, or you may be applying to external funding bodies, such as research councils, government agencies, or through non-governmental or international organisations. Before applying, you should thoroughly check the requirements of the funding call. For instance, is the topic of your research relevant? Is the amount of funding available appropriate for conducting your study? Are you or your Organisation eligible to apply? Is there a geographical focus of the donor or funding call reflected in your study? You should tailor your proposal to the funding call and ensure that you refer to any guidance mentioned by the donor.
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Finally, there may be internal processes within your Organisation that you may need to follow before applying, so it’s important to check what these are, too. Ethical approval must be granted before a research study can start. It is important to be aware that one study might require multiple ethics submissions, depending on the setting and requirements. Institutional review boards, IRBs, are committees within organisations appointed to review studies and provide ethical approval. It is important to consider and budget for your institution’s IRBs, country-level IRBs, research partner IRBs, and any approval beyond IRBs, such as specific research ethics committees within government ministries. There are also important ethical considerations to take into account when conducting research on disability, which will be discussed in week 3.
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It is important when you are developing a proposal to consider the human resources you will need to effectively conduct your research to a high standard. All research studies will require a principal investigator, or PI, who is primarily responsible for the research study. A research study will also commonly have a research coordinator, data collectors to collect data from the field, as well as staff to support administration and procurement for the study. Meaningfully engaging people with disabilities, such as hiring people with disabilities as part of the research team, should be a priority. Before starting data collection, you should provide all members of the research team with in-depth training on ethics, disability, and the study tools and protocols.
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Good strategies for training involve practical exercises, case studies, and involvement of disabled people’s organisations. You should also pilot test your tools before data collection to make sure participants understand the questions and procedures, and to identify any problems administrating the tools. Throughout data collection, monitoring can ensure data is collected accurately and according to study protocol. Examples of monitoring practises include tracking data collection progress, reviewing data for completeness and errors, and observing data collection and progress. It is essential to keep the data we collect secure and private. Data should be backed up as often as possible to avoid losing files. For example, upload audio recordings or completed questionnaires to a secure server at the end of each day.
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Digital files should be kept on password-protected encrypted servers and devices, while paper records should be kept at a trusted facility in locked storage. Data should be anonymized as soon as possible. This means removing any information such as names, addresses, and contact numbers that could be used to link data back to the respondent.
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When you’re analysing data and interpreting findings, it’s important to consider the diversity of experiences amongst people with disabilities by age, gender, impairment type, or other characteristic of interest to your research question. You should think about the types of analyses you want to do at the beginning of a project to make sure your sample size is large enough to explore these differences. Considerations for analysing and interpreting findings will be discussed in week 3. Good quality research can inform evidence-based policy and practise, so it’s important to share your research findings widely. You should think about who your target audience is and how to best reach them.
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There are many different ways to share research findings, and you should consider how different outputs reach different audiences, such as journal articles for academics, policy briefs for policymakers, infographics that can be shared over social media, and short reports, webinars, or videos that can be shared with the general public. All research output should be made accessible for people with disabilities, such as using screenreader compatible formats, sign language, or closed caption videos. Communication of research findings is covered in more depth in week 3.

Following the previous step on including people with disabilities throughout the research process, in this step Sarah Marks will give an overview of planning and running a research study. Sarah is a Research Fellow at the International Centre for Evidence in Disability, at London School of Hygiene & Tropical Medicine.

This step will help you to appreciate the stages of a typical research cycle and consider the steps involved in planning and running a study. There are multiple stages in the process of conducting a research project. From developing a research idea, to seeking funding, data collection through to dissemination. It is important at each stage to consider how people with disabilities can be included throughout the research cycle. There is no one size fits all approach to including people with disability in these different stages. However, there are many examples of good practice, and we hear about some. We will also revisit this idea later this week when we learn about participatory research methods.

A written summary of the research cycle is provided in the “Downloads” section below.

Cycle diagram showing each stage of the research process. Steps include conceptualisation, obtain approval, implementation, analysis, dissemination, and back to conceptualisation.

Image: The research cycle

Discussion

As ever, we would love to hear your thoughts and questions in the comments section below. Some questions to consider in the comments:

  • Do you have any ideas about how you might include people with disabilities in each of the stages of the research cycle?
  • Have you got an example from your own experience that you would like to share?
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Global Disability: Research and Evidence

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