Introduction

HIV cure research is complex and technical by nature, but it is essential that the results are understandable to a wide audience. This includes people living with HIV, specialist HIV doctors and nurses, and other interested parties. A public summary plays an important role in this by making scientific results understandable, promoting transparency and encouraging the involvement of non-scientists.

This guide provides HIV cure researchers with tips for writing effective public summaries ─ with an emphasis on clarity, accessibility and engagement.

What is a public summary?

A public summary is a clearly written, easily readable summary of a study that the target audience understands. The aim is to inform non-scientists and to give them a good grasp of the study without going into all the technical details.

A good public summary looks at things from the perspective of the reader: what do they need to know in order to understand the value of the research?

Who are you writing a public summary for?

Ideally, a public summary should be as widely applicable and understandable as possible. However, in some cases it may be necessary to adapt your language to a specific target group, such as people with HIV or potential funders. Make sure that someone from the target group checks the summary for you to ensure that it is comprehensible and relevant.

Why is a public summary important?

A public summary strengthens the involvement of various target groups, particularly people living with HIV. Within HIV research, this involvement is a core principle. The history of HIV research shows how crucial it is to take the lived experiences, knowledge and expectations of people with HIV seriously. By actively involving them, the research better aligns with their needs, interests and requests for help.

However, meaningful involvement is only possible when complex scientific language is converted into accessible information. This enables non-scientists to understand the content and delve deeper into the subject matter. In addition, a clear summary can lead to broader support and a greater willingness to participate in studies.

A well-written public summary also helps to translate research into policy and practice. For policymakers and implementers, understandable information is essential for effectively translating findings into policy measures. An accessible summary also provides valuable guidelines for interest groups and activists ─ such as people with HIV and their advocates ─ on how to use the research results for lobbying and activism.

What elements should be included in the public summary?

1. Explain the importance and relevance of the research
Clearly explain why the research is important. Which problem is being addressed, what the purpose of the research is, and why it is relevant to people living with HIV and society in general?

2. Mention how people with HIV are involved in the research
Explain at which stages of the research you involved people with HIV and in what way. Are experts by experience involved as research partners? How were participants recruited for the study. Were representatives of the target group able to observe the research process?

3. Focus on the main findings
You do not need to discuss all the details of the research. Focus on the most important results and explain them clearly and concisely. What are the main conclusions of the research and what are their implications?

4. State the conclusion, recommendations and possible next steps
Summarise the main conclusions of the research. What are the most important lessons we can learn from this, and what impact could these findings have on HIV treatment or a cure in the future? Put the results in the right context so that it is clear how they fit into the broader field of research.

Avoid painting too rosy a picture or exaggerating the findings. Use the results to ensure that expectations remain realistic and allow for the limits of what is possible.

How do you write a public summary?

1. Avoid jargon and technical language
Replace complicated terms with alternatives that are easy to understand. Use tools such as www.ishetb1.nl to simplify difficult words. If technical terms are unavoidable, explain them clearly.

2. Consider using visual aids
Diagrams, images and icons can explain complex information and make the text easier to understand.

3. Write clearly and accessibly
Use short paragraphs, clear headings and bullet points. Start with an introduction to the topic, explain the methodology and results, and finish off with the conclusion and its implications.

4. Ask for feedback from non-scientists
Test the comprehensibility of the summary by asking for feedback from people outside your field, such as a specialist HIV nurse or someone from the community.

5. Avoid unrealistic expectations
It can be tempting to make the research findings seem more significant than they are. Avoid this, as it can lead to unrealistic expectations among people with HIV. To do that, have your summary checked by a specialist HIV doctor to ensure that the implications are correctly and realistically formulated.

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