This spring we are talking science and responsibility
- Have you read Sparks Inception report? Get an overview of current and future trends at the intersection of technology, health, and medicine, learn from cases study making RRI tangible, and much more.
- Sparks has welcomed four artists in residency to create the artworks integrated to the exhibition. Lucy McRae and Anouk Wipprecht are already working at Ars Electronica while Lea and Jakob Illera, who are currently developing their prototype in Vienna, will join them soon. Follow news of the residencies on our social media!
- Sparks partners are gearing up for the exhibition: in May, all project members will attend a training in London to set up and run the exhibition at its the various locations.
- SAVE THE DATE! The exhibition will officially open in the Science Museum in London on 20 June 2016. More info soon available.
What is the impact of technology on healthcare and medicine?
We asked Cate Hankins, Deputy Director for Science at the Amsterdam Institute for Global Health and Development and Michiel Heidenrijk, Founder and Executive Director of the Amsterdam health and technology institute to share their views on this topic with us.
1) Can you give us an example of how technology is impacting medicine and healthcare today?
Cate Hankins: Electronic medical records have the very real potential to improve quality of care and patient health outcomes. They can empower patients and reduce the risk that poor communication among healthcare personnel will create problematic information gaps. It is absolutely mandatory that these records are protected by confidentiality and security measures, of course, and that they are accessible by both individual patients and care providers. Such records will totally change the role of patients: they will bring the patient into the care team rather than being an object of the care team.
Michiel Heidenrijk: One of most interesting developments we are seeing today is the use of data as an integral part of service delivery in healthcare. We can now build algorithms that allow us to ‘make sense’ of data from a wide variety of sources: personal, environmental, social, economic data. By analysing this data we get unprecedented insights on the factors that affect health. With this knowledge, we can design innovative healthcare service delivery systems which were impossible to think before.
2) How will the relationship between doctors, patients and healthcare providers change because of these new applications?
CH: In the same way that HIV care changed dramatically when physicians recognised that patients often were more aware of recent developments than doctors, knowledge sharing between patients and care providers will contribute to health decisions that are better tailored to individual patients and their circumstances. This is requiring, on the part of physicians, a willingness to dialogue and to research new approaches, brought to their attention by patients, to see if they have utility and validity.
MH: This is also an area where data will provoke a disruptive change. A technological application such as an intelligent pacemaker, for example, can greatly enhance the health of a person, but it does not really affect the delivery of healthcare services. Instead, when patients are in charge of monitoring their data, the interaction will change – it will be disrupted in fact – because patients will gain an active role in the delivery of healthcare services, they will stop being only on the receiving side.
3) With all this new knowledge, citizens can make better choices about their health, and we may not need many public health regulations as a consequence. What is your view on this issue?
MH: I think that the opposite is happening right now, we seem to have increasingly more regulations and constrains. This is the result of a widespread fear about the use of data and of the algorithms to analyse it. Many of the concerns are absolutely legitimate – think of security and ethics, for instance. But heavily regulating the use of data, a trend we are seeing in Europe right now, can actually stifle innovation.
CH: I believe that this is a time when the role of regulatory authorities in protecting public safety and well being is paramount. At a time of rapid expansion of knowledge across the health field, it is increasingly important to strengthen regulatory processes and increase public debate about ethical issues and societal choices in the field of health and health care.
4) The Sparks exhibition will focus on how ordinary citizens contribute in substantial ways to improve and innovate healthcare and medical research. What role plays public participation in your work?
MH: At ahti we are creating a global network of living labs, that is a system where innovations can be tested with the direct participation of all users. This is particularly useful for technologies that have the potential to change the healthcare system. Take for instance a home-based health monitoring app. In a controlled setting, that is in a conventional lab, you can test if the app technically works. But to test how it will impact the delivery of health services, and how it will change the whole healthcare system, you need to test it in the real conditions of use. Then you can see if this innovation makes the system better, cheaper, more efficient. This approach is called a “living lab”, which can be seen in fact as a participatory way to test innovations.
CH: When conducting clinical trials, we use good participatory practice (GPP) guidelines to make sure that all parties are engaged and involved in the process, especially when the trials are conducted in resource-poor or disadvantaged settings or among marginalised, stigmatised, and even criminalised populations. Without GPP, most of the trials would have not reached completion and would have been stopped in controversy and communication breakdowns. The GPP guidelines are anchored in guiding principles of respect, mutual understanding, integrity, transparency, accountability, and community stakeholder autonomy. I believe that these are principles have relevance beyond clinical trials, and for instance they are perfectly suited for citizen science and other participatory initiatives.
When it was introduced a few years ago, for many people the concept of Responsible Research and Innovation (RRI) looked more like a series of abstract concepts than a clear approach to carrying out research and innovation. However, there are now more and more examples that show what RRI actually is, how it is implemented and why it is beneficial for society. Projects such as RRI-Tools, for instance, provide a full catalogue of excellent case studies and exemplary projects that show RRI in practice. The catalogue and the toolbox provide a full range of initiatives that give “body” to the abstract concepts initially formulated in the academic and policy discourse around RRI. However, for the general public, even practical examples might be difficult to grasp, because they might be too specific, or too distant from “everyday life”. How can we convey the meaning of “responsibility” to an audience which may not be familiar, let alone engaged, with science and its practice?
Photo: Valentina Amorese, RRI ToolsA possible answer to this question comes from recent research by three social scientists, Phil Macnaghten, Sarah R. Davies & Matthew Kearnes, who studied how the public reacts in conversations and discussions about new technologies. They found out that regardless of the topic discussed, the public responds to new technology using three well-known storylines and narratives, often found in traditional tales. The first narrative represents stories of optimistic faith in progress, where developments in science and technology lead to a better society and help to solve the pressing problems of the world. The second narrative includes classical tales of “be careful what you wish for”, a storyline where the quest for knowledge leads to transgressing natural orders or boundaries, resulting in some form of punishment for these transgressions. For example, the story of Icarus who wanted to fly too close to the sun and fell down to earth. Or Pandora’s Box where the curiosity to discover what was hidden inside leads to all kinds of evil escaping into the world. The third narrative includes modern stories of social inequalities, where the rich get richer and the poor get poorer. Or where only an elite (the rich, advantaged) can actually profit from science, and the rest of the people are kept in the dark and are subject to something they cannot understand or control.
Knowing that the public tend to revert to these narratives to make sense of new technology can be very useful in preparing science engagement activities. With this narrative framework, the concept of “responsibility” is discussed using emotions and examples which are close to the mind and to the heart of the public.
If you are interested in knowing more about this approach, the Sparks inception report includes a section on how to use the narrative framework to identify RRI and engage the public.
 Sarah R. Davis is also a member of the Sparks reflective board
You may be familiar with the concept of ‘Science café’, an event where a scientist or a researcher meets the public in an informal setting (usually a bar or a café, hence the name). During these events the scientists present their current research, and the public is then encouraged to ask questions. The conversation usually flows freely and becomes an engaging dialogue with multiple voices. For researchers, it is a great opportunity to communicate with the public, and very often a Science café becomes an eye-opening experience as well, because of the many questions from the public.
However, it is also a format that can reiterate a common perception that scientists are ‘experts’, and the public is ‘non-expert’. A perception which should be questioned, as Jean-Marc Lévy-Leblond reminds us: “If scientists are definitely not universal experts, non-scientists are not universal non-experts.” 
The Copernicus Science Center has developed and evaluated a new participatory format of activities for Sparks called ‘Reversed Science café’, where the knowledge held by the public is regarded as an essential component to help scientists advance their research.
The concept is quite simple: scientists meet the public in the comfortable and informal setting of a café, but instead of presenting their research and answering questions from the public, they present to the public a ‘burning question’ to which they have no answer yet. Then the scientists leave the room for a short time, and the public discusses the question in small groups, in order to stimulate active participation. When the scientist is back, the conversation revolves around how to answer the question, often leading to insights which surprise both the scientists and the public. The key element in this format is that scientists must have a real need to receive feedback from the public and engage in a two-way dialogue with the audience. In a Reversed Science café all participants become the actual ‘everyday life experts’ that can help the scientists in their quest.
Pilot Reversed Science café at the Copernicus Science Centre (Warsaw). Photo: courtesy of CopernicusThe Reversed Science café will soon take place at all the Sparks locations. The results of the Reversed Science café will also be used to prepare the local case studies: an opportunity for everyone to contribute to the Sparks exhibition!
 Lévy-Leblond, J.-M. (1992). About misunderstandings about misunderstandings. Public Understanding of Science, 1(1), 17–21.
This newsletter was written by AHTI, a world-class public-private innovation institute supported by the Amsterdam Institute for Global Health and Development (NL) and the Duke Global Health Institute (USA). Ahti’s mission is to improve the urban health worldwide and to achieve a better quality of healthcare at a lower cost through education, research and by fostering entrepreneurship across a global network of ‘living labs’ centered in Amsterdam.
Coordination: KEA European Affairs, responsible for the Sparks communication strategy.