Toolkit - EURORDIS

Speak up. Listen up. Follow up: a Survey Design e-Toolkit

Welcome to the Speak up. Listen up. Follow up e-toolkit: a resource hub for survey design that will help you unleash the power of data capable of influencing policymakers, driving research and improving health outcomes for your patient community!

This is a centralised resource hub gathering different and complementary materials on survey design. Here you will find a myriad of resources, including guides, videos, courses and other actionable materials, on all the hot topics related to survey design.

The e-toolkit is organised into 8 steps which correspond to the most important phases of any survey.

This one – stop, stepwise repository will help you to efficiently identify the resources you need while, simultaneously, giving you a methodological overview of survey design. This is a live platform, which means we will continuously feed this hub, adding new, relevant materials as we create and/or identify them.

Let’s begin, step-by-step!

Step 1
Step 2
Step 3
Step 4
Step 5
Step 6
Step 7
Step 8

Step 1: Introduction to survey design, topic selection and objective definition

Survey design follows a multi-step approach which involves several decisions, resources and partners. The first and often most decisive step when conducting any survey is deciding what you want to explore, i.e. selecting a topic, and establishing the purpose and intent of your survey, i.e. what you want to achieve in broad terms. Put some time into getting a better understanding of the entire survey design process before rushing into any decisions. Also, it is key you dedicate time to planning your survey, debating options and troubleshooting with your team. The resources below will provide you with some context, tips and guidance on how to move forward. They will be a useful place to start, so come on, take the first step!

Files

Speak Up, Listen Up, Follow Up guide: A brief guide for rare disease patient organisations on how to listen to the communityA EURORDIS - Rare Diseases Europe practical guide on survey design adapted to the rare disease context. Target population: People with all levels of knowledge and experience with survey design.

How to listen to, gather & act on your community’s needs and insights: Your project planner An actionable project planner that will help you plan your project and keep track of your decisions to ensure you design a successful survey. Target population: People with all levels of knowledge and experience with survey design.

Rare Barometer guide: Make your voice heard! A Rare Barometer's guide on our survey design methodology. It explains how EURORDIS - Rare Diseases Europe member organisations can get involved and have access to their (country and/or disease-specific) survey results. Target population: People with all levels of knowledge and experience with survey design.

The power of survey design: A User’s Guide for Managing Surveys, Interpreting Results, and Influencing Respondents A World Bank guide for those who manage surveys and use survey results. It offers methodological guidance on designing surveys and advice on data accuracy. Target population: People with advanced knowledge and experience with survey design.

Videos

An Introduction to Designing Surveys A talk from Jessie Dubief (Rare Barometer) about survey design. Jessie breaks down survey design into 5 steps, sharing tips and specificities linked to rare diseases. Duration: 23 min. Target population: People of all levels of knowledge and experience with survey design.

Courses

Survey design for rare disease patient organisationsA EURORDIS Open Academy online course on survey design for rare disease patient organisations. Duration: Up to 5 hours. Target population: People with all levels of knowledge and experience with survey design.Enroll Now

Evidence-Based Advocacy: FundamentalsA WECAN Academy course on the importance of evidence generation, the different methods of generating and analysing data, and how to use data to drive change. Duration: Up to 7 hours. Target population: People with a beginner to intermediate level of knowledge and experience with survey design.Enroll Now

Step 2: Assemble Your Team

Designing an effective survey requires a varied set of skills and experience. Hence, assembling a multidisciplinary team, i.e. identifying and gathering people with the expertise you need and who will help you develop and deliver a successful project, is key in any survey. Take a look at the resources below - they will bring you some inspiration and real-life examples of the added value of putting together a winning team.

Files

How Can I Best Capture My Community’s Voice - ERN ERNICA's testimonialSlide deck of Simon Eaton's presentation on evidence generation and patient involvement in winning teams who develop successful surveys. Target population: People with all levels of knowledge and experience with survey design.

Videos

How Can I Best Capture My Community’s Voice - ERN ERNICA's testimonialSimon Eaton (ERN ERNICA) shares different evidence generation methods and examples. Simon explains how patients and patient representatives were involved in multi-disciplinary teams. Duration: 15 min. Target population: People with all levels of knowledge and experience with survey design.

Step 3: Do Your Background Research

Avoid duplicating efforts & reinventing the wheel by doing your background research. You may be eager to start developing your survey, but before you do, take a step back and do some searching. Find out what reliable information and data are already out there. There are several helpful databases and trustworthy organisations that you can explore. You will probably find best practices you could replicate or tools you can adapt or use directly. It will cost you some time and effort, but it will pay off, as it will move you forward in the right direction. Learn more about how to conduct your background research and where to look for reliable information below:

Files

Insight – What is already available?A NHS guide on the importance of doing background research before writing your questionnaire. The guide also lists reliable and relevant data sources you can search. Target population: People with all levels of knowledge and experience with survey design.

Databases and data sources A summary table of trustworthy health, research and rare diseases data sources that you can explore to conduct your background research. Target population: People with all levels of knowledge and experience with survey design, although some database follow strict searching methods.

Rare Barometer question repositoryA repository of questions on participant demographics and other general aspects in 26 languages. The repository lists the questions Rare Barometer uses in surveys. Target population: People with all levels of knowledge and experience with survey design.

Step 4: Define Your Target Audience and Plan Your Recruitment Strategy

After defining your topic, setting your objectives and goals, assembling your team and conducting your background research, you are now ready to take the fourth step - defining who your target population is and designing your recruitment plan, i.e. how to reach out to them. There are many things you should consider in this step, from the characteristics you want your respondents to have (e.g. age, gender, nationality, disease) to the recruitment channels and materials you will develop and use to invite and persuade them to participate in your survey. It might not be an easy task, but the materials below could help you out:

Files

Rare barometer communication toolkit: Treatment SurveyA Rare Barometer communication toolkit created for the treatment survey. It includes email and social media templates in multiple languages. Target population: People with all levels of knowledge and experience with survey design.

Rare barometer communication toolkit: NBS SurveyA Rare Barometer communication toolkit created for the newborn screening (NBS) survey. It includes email and social media templates in multiple languages. Target population: People with all levels of knowledge and experience with survey design.

Step 5: Select Your Method

People’s insights on and feedback about their experiences, needs and priorities can be gathered in a wide range of ways – there is no one-size-fits-all approach. To decide which method you should use to survey your community, you should think about your objectives & goals, how you intend to use the data you will collect and to which method your target population would respond better to. Also, data protection and privacy are not only buzzwords. You should do everything in your power to ensure your survey is ethically sound, i.e. that you are respecting the rights and privacy of your respondents, regardless of the method you choose to survey your community. Explore the resources below to learn more about what types of methods there are, how and when to use them:

Step 6: Analyse Your Data

Data analysis is frequently seen as the hardest step to take when designing a survey. It is not totally unfounded, as it takes skill, knowledge and time to make the most of the insights & experiences you collect from your patient community. Hence, you should plan early and decide how, when and by whom your survey data will be analysed and interpreted. Browse through the materials below to find advice and access some empowering resources and trainings that will make you see data analysis and interpretation in a different light:

Step 7: Report and disseminate your results

Remember that listening to your community is just half of the process. The data you gather and analyse needs to reach the people who will use the information to make decisions either at personal, institutional, country or international level. That is why the reporting and dissemination phase is a very important step of survey design. Make sure to always follow this motto: ‘communicate the right message, in the right format, through the right channels to the right people at the right time’. Find examples of different reporting formats and trainings below:

Step 8: Put Your Data into Action

In this section you will find a gallery of diverse case studies showcasing different survey design methods and outcomes. We hope these real-life examples will inspire you, help you identify best practices and show you how you can put your data into action. Take the final step - the finish line is just around the corner!