Eight guiding principles for caring technology

Technology should be an enabler, create added value for society, support people’s independence and self-esteem, and maximise the opportunities for users to make their own decisions. Human relationships must always be the focus; the technology should be in the background.

We also want to highlight the human factor during the development, evaluation, implementation and assignment of responsibility for technological innovation. In other words, the machine or computer should not take over from human beings. Making a diagnosis, assessment of care and support needs, initiating a treatment plan and all the other decisive steps in a clinical journey should take place under the supervision of human professionals. Artificial intelligence, computers and technology can support these processes, but they should never take over completely.

For every development in ‘caring technology’ we should ask ourselves whether citizens, patients, family carers and health professionals – in other words the wider group of users of the technology – receive sufficient benefits from the innovations that are introduced. The purpose of such new developments should be to support and improve people’s quality of life.

Fruitful collaboration requires sharing of data, knowledge and technology. This means having systems that communicate with each other, systems that are attuned to each other and innovative products that work together, without barriers and while preserving their own functionality and performance. Sharing and cooperation can only happen smoothly through the creation of a common technological ecosystem to which all the stakeholders, including patients and citizens can connect (open source).

An ecosystem for ‘caring technology’ requires more than just technical adjustments – development of standards, open interfaces, data integration, connection services, suitable data platforms and software etc. It also requires developers to adopt a different approach and existing commercial models need to be adapted. Above all, we must prevent the situation where the only innovations that get to the market are completely dependent on underlying technologies which are not shared or which are controlled by monopoly players.

Collaboration also means that the contribution of all the stakeholders – including end-users such as patients, citizens, care and health professionals and social workers – is taken into account in a way that is inclusive (“everyone is involved”) and that this is done systematically throughout the development process. We expect the emphasis in this process to be on the real needs of the end-users concerned, and that all actors will make efforts to ensure that those needs are met. The key concepts underlying this guiding principle for all the stakeholders are involvement, active participation, cooperation, collaboration and a needs-oriented approach.

To allow citizens, patients and other users to make informed choices, there needs to be appropriate and accessible information available that explains the benefits and inconveniences of an innovation in an objective way. This is required to ensure a sufficient degree of confidence in the innovations and allow people to act independently and responsibly.

Information should be disseminated in a way that is tailored for the various target groups. The fundamental target group is the end user: people needing care or assistance, and also those who wish to use technology to maintain their health. Care and health professionals and social workers should also be viewed as users of ‘caring technology’. They must also be able to make decisions on the basis of objective information. This information may, for example, be disseminated in the form of specific information leaflets, like the ones that are already issued for medications. These recommendations should be viewed above all as tools to provide insights and guidance to users, patients, citizens and others to help them to make the best choices.

Actively providing honest, easily understandable information is the job of everyone involved in the ecosystem: people who design and market technological innovations, actors in the fields of care, care, health and well-being, patient and user organisations, and public authorities. This mission to provide good information should be an integral part of the development of the ‘caring technology’ ecosystem itself.

The underlying idea is that everyone has control over their data, so that people are free to use their personal data for themselves, for their families or for the common good, for example in the context of scientific research.

Every citizen should be able to manage their own data, or to delegate its management to a third party of their choice. When it is delegated, however, this must take place on the basis of an informed choice and confidence. The actor who takes on guardianship of a person’s data must inform them transparently about how it is used. This requires the establishment of an accessible system of information and support.

Everyone should have a guarantee that their data is shared securely and in a way that respects their privacy and confidentiality. If people feel that the use of their data is no longer appropriate or is not what was originally agreed, they should have the right and opportunity to withdraw the data. This right should be set out and specified in informed consent documents.

Encouraging people to know about their own health and familiarising people with technological innovations are important mechanisms in order to make ‘caring technology’ accessible. This encouragement begins with education and public awareness, and it should be extended to include all courses of professional training. As well as systematically adapting to technological developments, (more) attention should be paid in education to subjects such as healthy lifestyles and prevention, because health is one of the fundamental components of quality of life.

When society uses a ‘caring technology’, attention should be paid to disadvantaged groups and vulnerable individuals. We must ensure that innovations in care and health do not make digital and health inequalities even worse. On the contrary, care and health technology can provide tools to remedy these inequalities by allowing everyone to participate.

It is not enough, however, simply to concentrate on the digital culture and on health skills. We want our young people to become critical, positive citizens who voluntarily play a constructive role in a society that is progressing in technological terms and who also remain sufficiently clear-minded, aware and critical to question both these developments and their own behaviour.

A learning community both within and around the ‘caring technology’ ecosystem should guide and make adjustments to its policies on innovation. This guidance should be based on a growing fund of data and analysis, expertise and understanding, evidence and feedback from user experiences etc. In short, the learning community will be built on a foundation of evolving insights.

This principle means that all those involved in the innovation system are invited to participate actively in its governance. This includes the government – which can set the general framework through legislation and funding – and also researchers, promoters, actors in the areas of care, health and well-being and their organisations, citizens and people requiring assistance, care and health.

All this requires transparent reporting on the effects of activities and policy measures and presupposes a willingness on the part of all the stakeholders to allow each other to participate in governance on an equal footing. This requires trust, open-mindedness and a willingness to work together to achieve common goals.

High-quality innovation mostly involves achieving predefined goals in terms of security, efficiency, cost-effectiveness, user-friendliness, transparency and usefulness of information, both at the individual level and for society as a whole.. We therefore expect innovations in ‘caring technology’ to meet requirements and obligations similar to those that apply to medicinal products and medical devices.

A well-organised system of quality control, a certification system for technological innovations and guarantees of traceability in the use of data will lead to greater trust among citizens. The eight effectiveness principles provide not only a development-oriented framework to build that trust, but they can also gradually evolve into an evaluation tool, together with linked evaluation questions.

In the context of quality assurance, alongside standard criteria such as scientific evidence and cost-efficiency ratios, it is important to include experiences of users (including patients, care and health professionals, family carers, citizens etc.).

The development of ‘caring technology’ should also be linked to the health and quality of life goals defined by society. Instead of curing and treating diseases, tomorrow’s care and health provision will need to emphasise preventing disease and preserving health.

New developments should fit into the wider context of fundamental international and democratic principles (for example the EU Charter of Fundamental Rights, the United Nations Declaration of Human Rights, the sustainable development goals etc.). These fundamental principles guide the democratic societies of today and tomorrow.

We therefore expect innovations in the area of health care to have a greater focus on prevention and also to integrate the principles of ethics and sustainability. Participants in the ‘caring technology’ ecosystem must translate these internationally recognised principles into a framework in which technological development can take place.