On 1 July 2020, we held our first public webinar to provide an overview of the Data Saves Lives (DSL) initiative, its background, aims and activities, predominantly to organisations that play an active role in supporting people living with disease. You can listen to the highlights here.

We were thrilled with the response, with approximately 50 people, many representing patient organisations, tuning in to hear from our four expert speakers and contributing to a lively discussion.

Representing DSL and providing a variety of perspective on the value and importance of responsible health data sharing, were:

• Nicola Bedlington, Former Secretary General - Special Adviser of European Patients Forum (EPF)

• Ania Henley, Adviser on the National Institute of Health Research (NIHR) Biomedical Research Centre (BRC) Patient and Public Panel at Imperial College, an EIT Health External Adviser

• Terje Peetso, Member of Board at North Estonia Medical Centre

• Veerle de Wispelaere, communications consultant at i~HD, the European Institute for Innovation through Health Data

There were a number of important questions from the audience that we have captured in this blog post, to share the answers from our panel with a wider group of viewers. If you’d like to keep up to date with DSL and be the first to hear about future webinars, follow us on Twitter and Instagram.

Q1. Is DSL just a European campaign and if so, do you liaise with other initiatives (if any) outside of Europe?

A1. DSL is a European initiative, led by the European Patient’s Forum (EPF), and it is fair to say that our focus at the moment getting DSL right in the context of the region. That being said, we are open to good practice that we can learn from, from anywhere in the world.

For example, EPF has a very strong relationship with our member group in the US (the national health council). We exchange information on their campaigns about responsible data sharing. There are many other ad-hoc opportunities to spread the DSL message. Only a couple of weeks ago we were interviewed by an initiative called Rare X that was very keen to look at our experiences in the DSL space that they can perhaps emulate in the rare disease space. And of course, the International Alliance of Patient Organisations is looking at our initiative very closely as well.

Q2. When will you localise materials and the website to European languages?

A2. Europe is a large and diverse area with different audiences. Language is not the only consideration, but also culture; what are the local practices; which info sources are available; how far have they progressed with raising awareness of responsible health data sharing, because there are major differences between different countries. To address that, we’ve decided to focus on patient organisations and provide them with toolkits to translate into local campaigns that are sensitive to local situations.

Q3. What contact has DSL had with the European Health Data Evidence Europe/ Digital Heath Europe?

A3.  Through the EPF family and all of the projects that EPF is involved in in the digital health space (including EHDEN and DHE), we are connecting with the right players. What we want to achieve with DSL is not duplication, but as many synergies as possible with other initiatives that are highly complementary in terms of their aims: public awareness raising of the value of responsible health data sharing, building trust and confidence. To date, we’ve had very positive feedback and interactions. We’ve been invited to present at various events and those opportunities should only increase as we move forward and become more mature as an initiative. We have that very much in mind.

Q4. Could you please recap on the core elements of your strategy to engage patients and the general public?

A4. It’s all about defining what the needs are – listening to stakeholder groups like patient organisations, and then co-creating solutions. Health data awareness is quite new, so there are no ‘off-the-shelf’ packages we can use; it’s a matter of co-creation and engagement. Engagement is primarily going on like today – listening to people, collecting input, and making a programme for the next set of tweet chats and webinars.  We have ideas about what would be useful in terms of developing a toolkit, sharing best practices, making the website more of an interactive space where patient groups can share their initiatives… but these are just ideas. We are currently in the stage of collecting information that will allow us to develop and prioritise solutions to allow us to fit the needs.

It’s important to understand that we are working hand-in glove with the EPF membership. Our reach as a European umbrella is vast, and we are working with our members closely to understand where the real gaps are, not just things we assume in our ‘Brussels bubble’. This is a key element of the DSL strategy. We don’t have the capacity to translate our materials, but we will be preparing others to utilise the fruits of what we do in the DSL context at national and regional levels. We’ve done it with other campaigns/initiatives within EPF and we’ve seen how it can be effective.

In terms of engaging the general public – patients are the priority. This came up at our advisory board last week. More broadly, we hope to organise a public opinion exercise to understand what the public are thinking about health data, especially in light of COVID-19. This will help us to devise our strategy later down the line with regards to reaching the public beyond the patient community.

Last but not least, education – not simply information provision – is extremely important. Education about the public good of responsible health data sharing is an important lesson we’ve learned from COVID-19.

Q5. You talked about a lot what the DSL Editorial Board is doing, what does it stand for?

A5. Well, we’ve stated it on the website. Please go and have a look at what we will and won’t do. We are not there to defend any specific stakeholders that are involved in data collection. We are not in the business of selling data. Our focus is in supporting projects that use data responsibly and ensuring trustworthiness. Trustworthiness is incredibly important and we need to ensure as an Editorial Board that we are constantly aware of this and working towards this.

Q6. Can you share the main contact in DSL to reach out to, to share information or for networking purposes?

A6. Of course, Gözde Susuzlu is the Project Coordinator of DSL. You can contact her and the group via dsl-info@eu-patient.eu .