It’s all about trust

After attending this year's OECD High-Level Policy Forum, Sciana Fellow Birgit Bauer reflects on ways to develop and maintain trust between patients and other healthcare stakeholders

Imagine a world where our societies are fully digitalised regarding our health. We use apps, electronic health records, video consultations, artificial intelligence, and much more. Our healthcare systems don’t just care; they enable and empower societies to do good prevention and develop new pandemic plans to protect all. Patients receive their diagnosis fast, while patient-centred and personalised medicine is available. And, of course, in this world, we share our health data. This is because we, as citizens and patients, are informed by politicians, developers, and other stakeholders coming from the healthcare sector.

And imagine one more thing… there is trust. Citizens and patients trust in the innovations in health, the decisions, and health care tools provided by different stakeholders. There is great health and digital health literacy among the public, and people are informed. That is one factor in gaining trust, right?

I attended this year’s OECD High-Level Policy Forum in Paris, France. It was a great opportunity where experts, health ministers from different countries, and a small number of patient representatives came together to discuss the future of people-centred health innovation and the issues around innovations, hurdles, and benefits.

It was interesting to hear what ministers and experts had to say and listen to the issues they have identified. These issues include providing good access to care in every country, exchanging health data across countries, and answering questions about the upcoming European Health Data Space.

Health data is essential for efficient and effective care and prevention. A healthy country is a wealthy country, as a very wise woman told me years ago. Additionally, we need health data to create new tools, to think innovatively, and realise new ways of healthcare. Of course, we have to make sure that people feel protected while sharing their health data. For those of us living in the European Union, this is where we benefit from GDPR.

The big question I’ve heard very often in the past, though, and more recently in Paris, is, “How do we generate or gain trust from the public? All stakeholders in healthcare, from the government level to developers, payers, digital health experts and so forth, need the trust of the people and patients. But it is currently missing.

For me, there is no clear answer to why this is the case. There are many factors influencing the “trust question”. I can see from the many discussions with people and patients I’ve had over the past few years, as well as deep listening on social media, that there is a huge distrust among populations.

It could be influenced by the historical background of a country, different cultures, or the knowledge a person has. It could also be the experience of politicians and health leaders of this world promising a lot and delivering too little. Another reason could be the political situation. Ongoing protests and demonstrations are showing this. But trust is essential to enable politicians and healthcare specialists to rethink healthcare systems and start the digital transformation.

During the Forum in Paris, Riina Sikkut, minister of health of the Republic of Estonia, said that if citizens will trust their genomic data to a startup, they should be able to trust it to a state. This statement says a lot about the situation, right? We should be able to trust our states when it comes to sharing health data.

We could ask now, “Why should we trust the state when there are so many things going on we don’t know as citizens?” This is a question we should discuss, but there are two other questions I think are necessary to consider when speaking to the government and healthcare stakeholders: Do you trust me as a citizen and as a patient? Do you trust my skills, abilities, and my own opinion?

As a citizen living in the European Union, I want to have their trust, too. It is my right because, very simply said, “Trust is like friendship.” Trust works with the principle of reciprocity. It is a give-and-take. To expect trust from another group means also to give trust to the people. And it is nothing you get easily. This needs work from human to human, open minds, and an interest in others. It is to meet and to know each other and create a trustworthy relationship.

Maybe you think differently, but I believe as soon as we go to vote for politicians to form governments and take decisions, we give trust. Mostly, this trust is not always in a person we know very well. Nevertheless, we still find some arguments given by the person to have the trust to vote for this person.

So, if I have trust in these people, why don’t they trust us? Us citizens, patients, and caregivers. Trust in our abilities, opinions, and thoughts. Trust in seeing us as partners on an eye level worthy of being heard and integrated into development and decision-making. We are people who are trustworthy.

Health innovation and One Health, also mentioned in the Forum, also require trust. Trust for all from all. We can’t stay any longer in our silos. We have to create digitalisation strategies and One Health strategies together as one public.

Health leaders can generate trust with transparent communication, easily accessible resources, and better education. Trust can be gained through listening and the exchange of information, thoughts, and ideas.

Of course, someone may have to make a decision at any time, but it is a difference when you have a trustworthy relationship with the public who is informed and aware of the next steps and knows why the decision is being made. To grow trust, leaders should inform, explain, and clarify. Last but not least, they should deliver what they promise or explain if it is not possible.

We all have to get the trust of others, especially when it comes to healthcare and health innovation. As a patient myself, I can say I learned to trust in doctors’ recommendations, their analysis of my MRI scans and much more. It is a challenge to give trust, and it makes it easier to get some trust back. But what I have learned, too, is trust is the base you need once you have to make a decision for your own health. Therefore, don’t discuss how to gain trust; just start doing it. It is a human factor, and we all have the skills to grow it.

Photo: © OECD

This article was authored by Sciana Fellow Birgit Bauer. The views and opinions expressed in this article do not necessarily represent the views of their organisation(s), Sciana: The Health Leaders Network, nor those of the Sciana Network's three funding foundations.