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Making data work for you: the basics of data collection and handling for patient groups

7th July at 11:00 am - 9th July at 1:00 pm


Findacure is pleased to announce its next online workshop, which will provide guidance and practical advice to patient groups seeking to better understand their data collection practices to make their data work better for them.

Taking place in two hour interactive sessions across three days, the workshop will delve into why and how data should be collected, the key regulations and best practice for approaching data storage and use, and ways that data can be utilised to inform key projects and strategy.

This workshop aims to clear up any confusion over the large topic of what constitutes data and how it should be properly collected by providing insights from expert trainers, examples of creative data uses and reflection activities to help attendees evaluate their own practices.

Attendees will gain the most benefit by attending all three days of the workshop, however, you can also sign up for each session independently.

As spaces are limited, we politely request that only one member from each organisation registers to attend.

11:00am - 1:00pm, Wednesday 7th July

Day one of our workshop will take us back to the basics of what data fundamentally is and why patient groups need to pay special attention to the data they are collecting and why. This session will encourage attendees to reflect on their own data collection practices and purposes. 

What will be covered?

– What is data? 
– What are the different kinds of data?
– Why is it necessary for patient groups to collect data? 
– What can data be used for?
– What are the benefits of collecting data? 

11:00am - 1:00pm, Thursday 8th July

Day two of our workshop will be led by an external trainer and will focus on refreshing attendees on the key rules and regulations of collecting and handling data as well as informing on best practice to avoid issues, ensure efficient procedures and minimise risk of breaches.

What will be covered?

– Best practices for holding and collecting data
– Major rules and regulations relating to data use
– GDPR compliance
– Data use on an internatinal level 
– Achieving transparency with your data use

11:00am - 1:00pm, Friday 9th July

Day three will focus on different ways that patient groups can collect data and tools to help them do so more easily and effectively. 

What will be covered?

– Tools to help with data collection
– Different methods of collecting data
– Using data to better understand your community
– Using data to inform projects and drive future strategy
– Real world patient group case studies of using data in different ways

The workshop will be hosted on Zoom and joining details will be sent to attendees upon registration. When registering, please ensure you select a ticket for each session you wish to attend. 

Findacure would like to thank The National Lottery Community Fund and Alexion for providing funding for The Empowerment Programme.


7th July at 11:00 am
9th July at 1:00 pm


Philippa Norman