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The EU Data Protection Regulation was of great concern to Europe’s health research community, but communicating these concerns to policymakers in Brussels and bringing about tangible change presented a series of challenges. ‘Too techy’, ‘too inhuman’ and ‘too UK’ were critical refrains facing organisations talking to policymakers in the Belgium capital. Post Snowden, the popular discourse in the European Parliament was based around ‘absolute privacy at any price’ – and, increasingly, it looked as though this price might be medical research.
The medical research community – including Cancer Research UK – had strong, evidenced-based policy arguments on its side, but these arguments were struggling to cut through. To shift the debate, we needed a whole new approach to our communications and new channels for communicating.
 Data Saves Lives – getting started
The Data Saves Lives campaign was launched by a core group of founding members including the Wellcome Trust with Cancer Research UK taking a driving role. Crucially, the campaign secured early support from pan EU organisations representing both patients and researchers. From the get-go therefore, we were able to demonstrate that our research concerns were shared across Europe and not unique to the UK – vital for having an impact in Brussels. The involvement of patient groups was equally important as it demonstrated that our concerns were a health issue – a crucial first step in humanizing our policy calls.
Creating an alliance - galvanizing Europe’s health and research community
Quickly, several organisations from across Europe signed up as supporters. Indeed, a key function of the campaign has been that it has galvanized support. Whereas concerns about the regulation were long-standing, previously individuals and organisations had no central point through which they could be represented.
An advocacy tool
One of the campaign’s main objectives was to give voice to the patients and researchers who stand to lose out if the draft law does not get the balance right. On the website there are a series of video testimonials from a patient and researcher in which they share their thoughts on the value of research and how they view the regulation. These testimonials have been invaluable as we know that policymakers need to hear from ‘real people’ and that their arguments have a real impact.
The videos have been crucial in helping us bring the campaign off the website. Not only do we leverage them on Twitter, we also make sure that we show them in meetings with policymakers and at speaking opportunities to ensure that the campaign is reaching on and offline channels.
Beyond video, the campaign’s Twitter feed has been instrumental in activating the broader European patient and research community. Although concerned, many non-policy experts outside of Brussels were at a loss as to how they could help make a difference and make their voice heard. The campaign provides a channel for them. A great many patients and researchers across Europe have posted photos on Twitter with their message to policymakers, using our handle and hashtag. Not only has this given the campaign a grassroots feel which has been really beneficial, it has really helped to cement the campaign’s messages into the policy consciousness.
Cancer Research UK has supported the Twitter feed by engaging with the policymakers we care about to communicate our key messages, complementing the grassroots advocacy of the patient and researcher activity.
Making it real with case studies
 Policymakers told us that they desperately needed examples that support our concerns. To fulfill this need and bring our issues to life we created a case study bank that sits on the website. The case study bank is a collection of research studies from across Europe that could be threatened by the draft law. These case studies have been picked up well on social media and are naturally weaved into all our communications, including press releases and press comments.
Educating policymakers; up skilling advocates
We understood that the problems we faced on the draft law were often born out of insufficient understanding on the part of policymakers about how research is conducted. A key objective of the campaign was therefore education. We developed a series of high-quality materials in lay language designed to help our target audience understand our issues (position papers, a glossary to demystify technical terms and a Q and A). These materials are housed on the website and leveraged on social media as well as being in constant active use in meetings and at events and seminars.
The materials also empower and equip those who want to address the issue with policymakers and ensure members of the Alliance are aligned in their messaging and communications – vital for making an impact.
Developing the campaign with an online petition
To demonstrate to policymakers the groundswell of support for our concerns, we have recently launched an online petition that we leveraged through our networks. The petition has been invaluable in re-engaging supporters and re-energizing the campaign. With 600 signatories in the first few days, the petition will separate out researchers, patients and other supporters. We presented the petition figures at a ‘Data Saves Lives’ event in the European Parliament in November, ahead of a key trilogue discussion.
Results
The campaign is ingrained into all our communications, from one to one meetings to paid media and press. The campaign shifted the debate about personal data and research in Europe, playing a crucial role in ensure that the compromise text that emerged from trilogue strikes a crucial balance between safeguarding research and protecting privacy.
The campaign website has had close to 20 000 page views, and users spend over 2 minutes per session. We have close to 6000 high-quality followers on Twitter, representing policymakers and Europe’s health community.
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Campaign: Data Saves Lives Campaign