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Social research is a powerful tool when it comes to the work of rare disease patient groups. To explore this avenue further and learn how to actually go about it, Findacure teamed up with our friends and market research experts, Kudos Health Research, to deliver a day-long workshop on Wednesday.

For those who don’t already know, our training workshops help rare disease patient organisations get the skills, knowledge and confidence that they need to achieve their own goals – whether they’re in raising awareness, patient support or medical research. Each workshop focuses on a specific topic and is open to all patient advocates who wish to join in and learn from our experienced speakers. You can find out more about our workshop programme here.

As social research is relevant to so many aspects of a patient group’s work, today’s blog shares some of top things we learned for those unable to make it…

Social research is a very powerful tool

Social research allows you to make the most of your most important and knowledgeable resource: your community! This includes patients, parents, carers and other family members. These individuals have the most in-depth knowledge about living with the disease and how things can be improved, and social research is gives you the opportunity to tap into these insights and better serve your community’s needs.

There is a whole range of data you can collect (e.g. who your community is, such as age and location; how the disease affects their lives, such as quality of life and financial burden of disease; and how interventions improve their lives, such as services you run and medical interventions)…

… But how does this information actually help you as a patient group? The results of your research can allow you to see gaps in support and identify where your organisation can have the biggest impact. By collecting evidence on the current situation facing your community, you can strengthen your campaigns for change and funding applications. You can also support the medical research process by providing information (consent permitting!) about members of your community and their collective research priorities. You can even collect information on how a medical intervention, such as a drug or device, has impacted patients’ quality of life to supplement the scientific evidence (known as Patient Reported Outcomes). There are so many possibilities with social research!

There are lots of methods to choose between

Research questions can be divided into two categories: quantitative and qualitative. Quantitative research is designed to collect numbers, such as the number of hospital appointments patients attend in the year, or the percentage of people who explicitly agree with a particular statement about your services. Qualitative research is designed to collect descriptions, such as attitudes, opinions and explanations. Qualitative is more in-depth, but it is harder to categorise and analyse the results compared to quantitative.

When you know what type of data you want to collect, you can decide how you want to collect it. The main ones highlighted in the workshop were:

  • Questionnaires: a series of written questions distributed to people, often via an online form or on paper. Questions can be qualitative or quantitative.
  • Interviews: a series of vocal questions asked in conversation, often in a 1:1 meeting or over the phone. Questions can be qualitative or quantitative.
  • Focus groups: a group discussion where a question is presented and the group has to discuss. Questions are mostly qualitative.
  • Ethnography: an observation exercise, where the researcher observes a particular situation (such as a patient going about their day-to-day lives) and takes notes to answer their research questions.

But there plenty of other methods you can consider, such as respondent generated stimulus, protective enabling techniques, experiential research, MROCs, video diaries, switch session groups… the list goes on and on!


Language matters

There’s no point in conducting social research if the way the questions are worded influence the answers. So-called loaded questions, which hint at a particular response, should be avoided because they will not give you genuine information about the opinions of your community. The best way to avoid this is by eliminating any pre-conceived ideas before writing the questions, and by asking open rather than closed questions. For instance:

  • Rather than asking ‘Was X easy?’, you can ask ‘What do you think about X?’
  • Rather than asking ‘Do you…?’, you can ask ‘How do you…?’
  • Rather than asking ‘Do you agree that?’, you can ask ‘To what extent do you agree that?’

Who does the research represent?

Your research should represent everyone in your target audience, whether that’s your whole community or a specific sub-section. If it does not represent everyone, the results will tell you something that isn’t necessarily true for the wider population they supposedly represent.

The best way ensure diverse representation is making the research easy to access and take part in. For instance, if your target community finds it difficult to use computers, you could offer to send them a paper survey or ask the questions over the phone. If your target community is too busy to answer a long survey, you can offer them the opportunity to make a password and come back to it at a later date. If your target community is international, you can make it available in multiple languages.

To give another example, let’s say you want find out your community’s opinion on a particular service you offer in order to improve it. You send a survey to those who already use the service and collect your results. However, this excludes members of your community who do not use the service at all. If you really want to improve your service, you need to know why members aren’t using it and find a way to ask these people.

GDPR is as much about documenting decisions as making them

It is important to consider data protection regulations when planning any piece of social research. You need to decide what information you are collecting, why it’s being collected, how it will be used, how it’s being stored, and who has access to it. Making these decisions is important, but documenting them and communicating them to respondents is just as important under the new GDPR regulation. If you are completely new to GDPR, feel free to find out more from our e-learning portal.


We would like to thank all of our wonderful speakers – Rezina Chowdhury, Lorna Kirman, Mitchell Cooke and Ann-Marie Greensmith – for their help. If you would like to find out more, please don’t hesitate to contact Libbie, our Projects and Communications Manager, on [email protected].

Patient groups and the power of social research

by Libbie Read time to read: 6 min