By Philippa Shelton, Communications Manager, Understanding Patient Data

Published: 24 January 2019

In March 2018, Understanding Patient Data (UPD) launched a series of six short animations. Designed for social media, their aim was to raise awareness, and create reassurance, that patient data is used to benefit health and care.

They brought to life examples of what happens to patient data in the NHS following the journeys of patients with cancer, a heart attack, diabetes, dementia and asthma. They show the huge range of ways data is used to improve care, and the safeguards that are in place to protect confidentiality.

Telling the story with one voice

Members of AMRC have long known that better use of data is essential to speed up diagnosis, research new treatments, plan better NHS services and monitor the safety of drugs. And yet, more than two thirds of the population feel they don’t know how patient data is used in the NHS. Without enough information, people may worry about how data is collected, stored or used.

Medical Research charities and other organisations needed to collectively voice one patient data message with stories that resonated with patients and publics.

Working in partnership   

The animation working group, set up by UPD to oversee the project, had 20 members from 13 organisations, including two patient representatives. We all brought different perspectives and agreed to one shared goal.

Many more charities and organisations helped us test scripts and storyboards, while others raised early awareness of the animations across their networks.

By launch day, everyone felt some sort of ownership over the project, which motivated over 30 organisations to get involved in dissemination and sharing the animations. At least 22 AMRC member charities were involved via Twitter between 12-23 March. This is 17 additional charities beyond those involved in the working group.

Our impact far surpassed expectations

Between March and May 2018, the animations:

  • Were viewed over 1.5 million times, six times the target.
  • Generated 6,490 engagements on Twitter and 50,896 on Facebook.
  • Increased UPD twitter followers by 53%, many of whom were members of the public, nurses and doctors.
  • More than doubled traffic to UPD website from 350 users/wk to 750 users/wk.
  • Seemed to have not been affected by the Cambridge Analytica/Facebook scandal which hit the news during the campaign. There was no measurable change in the engagement.
  • Generated varied non-social media dissemination, ranging from embedding into websites, blogs and showcasing at conferences. They are referenced on the Royal College of Nursing, Royal College of GPs, and NHS England webpages

Since May 2018, the series went on to win the UKIACR Infographic and Data visualisation competition 2018. And win silver in the Best Specialist category of the Content Marketing Association Awards 2018.

Lessons learnt

  • Pick the right agency. UPD held a competitive tender process. We looked for an agency who could not only create beautiful animations, but who we could work with productively through challenging conversations.
  • Set up immediate access to a large number of stakeholders (and their networks). This enabled us to test with more perspectives and mobilise a significant collective voice
  • Have commitment from working group members who can do their fair share of elbow grease. One person could not have covered so many partnerships and stakeholders.
  • Test extensively. We had almost 100 reviewers and testers. If there was more time I would have liked more public testing.
  • Have one person to coordinate and collate feedback. This was essential to the agency and took the load off them to absorb the patient data backstory.
  • Get out there and talk to people. Meeting face-to-face with potential supporters helped us secure buy-in for the final series.
  • Writing scripts is a labour of love and ended up pushing our deadline back by almost 3 months. However, taking this time made the animations more considered and more robust.
  • Create a dissemination toolkit. This enabled the project to coordinate a single voice across the medical research charity sector. It gave the option for charities to re-use the video assets directly, or the flexibility to adapt them to certain needs or audiences.

What next?

We’d like to see more charities use and adapt the animations to tell the story of how data saves lives.

For example, joint with the Professional Records Standards Body, UPD launched a seventh animation about sharing data for individual care. It re-uses the existing characters and it would be great to see AMRC members do something similar. 

The animations are free to use through a CC-BY licence. For the toolkit, video files or images please email [email protected]