‘Narrative analysis offers new ways to look at patient-oriented care.’

Patients should have a strong voice in the shaping of care and can see things that are missed by other stakeholders. Yet hospitals are complex technological organisations that can be difficult to navigate. If patients do not speak up, they run a risk of being ignored or receiving bad care. But those who do speak up run the risk of being seen as aggressive. Dutch patient organizations, medical occupational groups and some political parties have disputed whether the ‘independent and active’ patient exists. How could TA examine the feasibility of this position?

In the Patients Know Better project undertaken by the Rathenau Instituut, a novel method of technology assessment derived from the field of narrative health research was used to analyse the perspective of patients in hospitals.

Patients submitted their experiences to a website in the form of a letter between 200 and 2,000 words together with a ‘wish’. Open and exploratory storytelling is a central feature of narrative research. After posting the ‘letter’, participants were asked to answer a few questions related to its interpretation, for instance if they felt it was a positive, ambivalent or negative experience and for what reasons. This was done to gain insight into the themes that were important to participants while in the hospital and to identify the main lessons to be learned from their perspective. Background questions related to the writer were also asked about their kind of illness, length of stay, location and type of hospital and socio-economic variables such as gender, age, educational level and income of the writer. Writers of the stories were a heterogeneous group of varying gender, age, education level, income and experience with hospital care.

The narratives underwent story analysis: in-depth analysis of single stories and broad analysis of all stories in order to find patterns of differences and similarities. This resulted in nine experience types, which were used as an analytical framework for the remainder which were then summarised into four themes, each indicating a particular dilemma or tension related to the research question regarding the feasibility of the active and independent patient.

The stories from patients had a powerful impact. Patient experiences give insight into where and how the quality of care can be improved in hospitals, at all levels.  Hospitals should embed listening to patient experiences in their quality systems to make care more efficient and patient centered.

It was a message that was well received by relevant stakeholders and politicians. Two Members of Parliament asked the Dutch Minister of Health Care for a response to the report during a meeting on hospital care. In her letter, the Minister stated she subscribed to the main conclusions of the report.

Read More?

What can TA learn from patient narratives? Using narrative methodology to assess the role of patients in Dutch hospitals. In Technology Assessment and Policy Areas of Great Transitions, proceedings from the 2013 PACITA conference.

Heerings M, Egmond S van, Sools A, Duijvenbooden L van & Drossaert S. 2014.

www.patientenwetenbeter.nl

www.rathenau.nl/en/themes/theme/project/patients-knowbetter.html

Text: Stans van Egmond and Marjolijn Heerings

Photo: Birgitte Heneide

Technology Assessment has a large toolbox of methods involving a range of different actors. The CIPAST-project (Citizen Participation in Science and Technology), which ended in 2008, described many of them, particularly those involving citizens. The focus group was one of the methods presented.

A focus group is a structured group interview, first used in the United States in the 1980s by sociologist Robert Merton. A group is composed of participants who have specific knowledge or experience of the topic at hand. This could be ‘teenagers who use smart phones’, or ‘parents of children with asthma’ or ‘workers at a car factory’.

‘Teenagers who use smart phones’ is a topic suitable for a focus group

The scope of a focus group is limited and defined in advance by the researcher. They follow a semi-structured interview format, where the researcher asks prompting questions. However, it is important that the discussions are open, so that the participants can share their experiences and comment on each other’s views. This is the strength of this method: the discussions and interaction between the participants produces more information than the participants would provide one by one. Another advantage of the focus group is that it allows the researcher to document the processes whereby group meanings are shaped, elaborated and applied, by letting the participants discuss and share with each other. As the participants are selected based on their own experiences, the focus group is an effective method for providing information on attitudes, values and societal norms – for example what teenagers think about privacy issues related to their own smart phone use.

Several institutions in the field of technology assessment have used focus groups in their projects. In 2010 the Norwegian Board of Technology (NBT)’s Patient 2.0 project was trying to ascertain what people with chronic illnesses thought about online health services. Recruitment for the group was done in cooperation with some of the largest patient organizations in Norway with a total of 21 patients participating.

“The focus groups provided important insights on what kind of services the patients needed, what they expected from the care services and their experiences with already implemented online solutions”, according to NBT project manager Jon Fixdal. Drawing on their own experiences with the health care system, patients wanted the possibility to add information about their daily condition into their patient journal, so that it could be discussed with their doctor later. Another recommendation was to establish an online health portal, for finding quality assured health information.

Fixdal highlights another aspect of the focus groups – the fact that it is well suited for multi-method projects. In Patient 2.0, focus groups were held together with an expert group. Both methods proved valuable and the recommendations produced for the decision-makers were listened to. Getting expert opinions from research and industry, but also user experience from patients, was welcomed by parliamentarians.

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CIPAST – Citizen participation in science and technology 

Text: Marianne Barland

Photo: Birgitte Heneide

Let’s start with a bit of theory. There are three socalled schools of TA: Classical TA, Participatory TA and Argumentative TA. Communicative TA belongs to the last category because it initiates a discussion that includes values and ethics,  which distinguishes it from the purely technocratic arguments of Classical TA and the one-way stream of information towards parliament of Participatory TA. Institutes that do more than just inform the public about published reports such as organizing exhibitions and public debates, are doing Communicative TA.

It is not, perhaps, a term that is universally used but this does not mean that many institutes aren’t engaging in activities that fall into the category of Communicative TA. Encouraging a response is what matters. It’s a method that seeks to open up the public forum, to stimulate debate and opinions, and that explicitly steers discussion towards an open-ended, rather than closed, result. A recent debate about human enhancement held by the Rathenau Institute, for example, did not intend to come to hard and fast conclusions, but rather enable participants to give voice to their views and think about the subject. A diverse, even playful agenda can encourage debate. Christine D’Anna Huber of the Communication Department at TA-SWISS has been working on ambitious plans for the coming months: an exhibition on nanomaterials, public debates on robotics in healthcare and a cartoon contest for art schools.

‘Unexpected twists are stimulating. Try inviting a policeman to talk at a debate on human enhancement like we did.’

Frans Brom, head of the TA-department at the Rathenau Institute in the Netherlands, thoroughly approves of this approach: “Unexpected twists are stimulating. Try inviting a policeman to talk at a debate on human enhancement like we did.” The Norwegian Board of Technology ran an exhibition on the future of ageing and welfare technology, which obviously struck a chord. “We did this in cooperation with the Norwegian museum of science and technology, “ explains Marianne Barland, communications advisor at NBT. “The exhibition was so popular that it later travelled all over Norway to be displayed at different events.”In 2011 the Rathenau Institute worked on a project that included discussion of the market for human tissue. A documentary, with a title loosely translated as ‘Baby for sale’, was broadcast on national television and attracted a lot of media attention.

In 2010 the Rathenau Instituut was present with a robot at an art festival to stimulate the debate on new technology.

Institutes with a healthy budget for communications are particularly well equipped to apply Communicative TA successfully. But where this is lacking, strong links and a good network and collaboration with other institutions help to expand resources and maximize impact, according to D’Anna Huber. Brom thinks that Europe would benefit from more public debate on the societal impact of new technology and could therefore use more Communicative TA but current obstacles also include the diversity of languages, the absence of unified politics and a lack of appropriate media. His hope is therefore directed at creative visual forms of communication like videos, cartoons and animations: “Images go beyond national and language borders. They can help build a European civil society around technological developments that call for debate and public dialogue.”

Text: Hanneke Teunissen
Photo: Loes Schleedoorn

‘A future panel requires visionary thinking that crosses the boundaries of different sectors, spheres of competence and professional disciplines’

Public health genomics is a clear example of a topic with governance implications across many spheres. “It touches on transnational issues such as data sharing and informed consent, as well as the clinical validity and utility of genomic tests,” explains André Krom from the Rathenau Institute in the Netherlands. It’s also a method that aims to create a long term engagement with a topic and the issues under discussion. Over a two-year period, several opportunities are created for the feedback of results between politicians, policymakers and the scientists. Even better, there are opportunities for constructive interaction.

Members of a future panel are selected on the basis of their political status. They are current members of parliament in national member states, and importantly, their political responsibilities must include the topic under discussion.

As coordinator of the future panel on public health genomics, Krom sees major benefits in including members of parliament at an early stage. One of these is that parliamentarians provide direct input into the research process. Maintaining close ties between policy and research enables the research output to be fed back into the policy making process. “Of course, we hope that our future panel members can act as ambassadors of the issues raised by developments in the field of public health genomics in their respective parliaments,” explains Krom, “but members of parliament do not have to do the job entirely on their own”. In line with the idea of expert-based policy-making, members of parliament are joined by colleagues from the clinic, the lab, the market, and by experts covering the ethical and legal aspects of public health genomics. “Part of the PACITA methodology is to combine the insights of politicians with those of policy-makers and scientists,” says Krom.

The members of parliament can contribute real issues that arise from their daily political environment. Consequently, scientists will interpret these as being closely connected to what is considered to be relevant from a policy-making perspective. But this method is not without challenges. For instance, members of parliaments are often responsible for other, potentially conflicting, topics. The transition from ‘public health genomics’ to ‘the public debating health genomics’ needs deliberation but it’s a transition that should be acknowledged, according to Krom: “In my opinion, it is clear that the broader public should be included at some point. If we are talking about public health genomics, we are talking about using genomics to protect or promote the health of the (broader) public.”

Read More?

The emerging field of Public Health Genomics intends to integrate genome-based knowledge and technologies into public policy and into health services.
Further information on the PACITA Future Panel can be found on the PACITA website.
More information on how future panels work is available from the Danish Board of Technology.

Text: Adele Flakke Johannessen.

Photo: iStockphoto.

‘Scenario based analysis can strengthen communication with stakeholders.’

While working on a military project for the RAND Corporation in the 1950s, American physicist Herman Kahn came up with a radical new method for analysing events before they happened. Using clues from the current situation as his starting point, he created reality-based story lines —much like a writer in the film industry would— by playing around with developments and influences which resulted in different scenarios. Kahn’s Cold War scenarios dealt with nuclear warfare; not only how it was possible but more controversially, winnable.

This scenario based analysis technique is still used by policy–makers, scholars and large corporations like Shell. And it can also be useful for technology assessment specialists. According to Lars Klüver, Director of The Danish Board of Technology Foundation, scenario based analysis is very good when exploring technology transition —from mineral oil to biofuel for instance. A good analysis can illuminate the constraints, the needed scale of change, and the policies that will favour a transition.

“Scenarios are built by identifying current factors that could have a strong influence in the (near) future,” explains Klüver. “A TA–professional will examine which outcomes could be the result of these influences. Usually, we produce a limited number of scenarios, for instance a negative, neutral and positive scenario.”

A recent example is the study Future Perspectives of 2nd Generation Biofuels published by TA Swiss in 2010. In this study, three very different biofuel scenarios for Switzerland for the years 2015–2030 were developed and analysed. The scenarios brought up many interesting developments. For example, in certain scenarios biofuels resulted in less greenhouse gas reduction than hoped for. It helped law-makers reach decisions.

But it is important to remember a scenario is a forecast, not a prophecy. As Klüver says, “It is a description of one out of many possible futures. Because of that, the process of making the scenario is like a negotiation process with stakeholders, politicians, and different experts making the decisions that define the scenario.”

As a bonus, scenario based analysis can also increase the ownership among those involved in a decision and strengthen communication with stakeholders. Using this strategy correctly might enable a level of consensus to be created round a scenario thereby smoothing the policy–making process.

So when is scenario based analysis not a good method? When ‘large transitions are unrealistic,’ according to Klüver. Situations where cautious incremental small step change is dominant or where more or less deterministic factors such as an ageing society or a depletion of resources are at play. “There needs to be a high degree of freedom for change for scenario based analysis to make sense.”

Text: Philip Dröge

Photo: gettyimages

Imagine a group of 14-16 ordinary citizens engaging in a dialogue with a panel of experts about a complex technology policy issue. The discussions are focused on questions developed by the citizens themselves and they can formulate advice to policy makers on how that topic should be dealt with. This is what happens in a consensus conference.

The Danish Board of Technology developed the model in the 1980s and it has been used throughout the world to debate issues such as electronic surveillance (Denmark), spatial planning, mobility and sustainable development (Belgium), plant biotechnology (New Zealand), and genetically modified food (Norway). It is an exercise in practical democracy whereby citizens contribute knowledge and perspectives that scientists and experts might miss, because they are not influenced by scientific norms or economic interests.

A typical topic will affect a large part of the population, it will require scientific knowledge for clarification, and include ethical/normative issues. Part of the rationale for consensus conferences is that ordinary citizens can be just as qualified to assess such issues as experts.

‘Citizens contribute knowledge and perspectives that scientists and experts might miss’

It takes place in three stages. Two preparatory weekends where the lay panel learns about the topic and formulates questions, the conference itself with questioning of experts who each give a brief presentation, and finally, the writing of the consensus report. This is often an intensive two or three days involving around-the-clock effort at the end. As soon as the final statement is ready, it is presented to policy makers and the media at a press conference.

Photo: Eivind H. Natvig. Norwegian Citizens participating in World Wide Views on Global Warming in September 2009. World Wide Views was an international project, organizing consensus conferences on global warming in 38 countries around the world

Two of the most important contributions citizens can give to a decision making process, are valuative understanding and knowledge about the local environment. After an introduction to the topic, citizens without specialist knowledge are able to discuss and form opinions about how a technology might affect their values. They can also contribute with causal information about their home environment; knowledge they have accumulated by being members of their specific community.

Who are the participants? A lay panel in a consensus conference is a selection of engaged citizens. People who respond to an advertisement for participation, and who are willing to spend three weekends learning about and debating a complex policy issue. They cannot be considered representative of the broader public in any statistical sense, but by using criteria like age, education, occupation and area of residence, it is possible to increase the likelihood that the questions they formulate will cover a similar set of issues as another group fulfilling the same criteria.

Similar participatory models, like the German Planning cell method and the US Citizens panels, share a belief in the ability of ordinary citizens to debate and provide advice about complex issues. Discussions concerning the ethical sides of cell research or biotechology can provide great input for decision-makers and play an important role in lifting complex policy issues out of the often closed realms of experts and policy makers, and into the public sphere.
 

Text: Jon Fixdal.

The Rathenau Instituut, the technology and science system assessment institute for the Dutch parliament, is launching their first iPhone app this winter: a game on human enhancement. “We want to reach new audiences, that we do not reach through more traditional media”, explains senior researcher Ira van Keulen. The game is designed to encourage players to think about the ethical dilemmas of human enhancement. It’s a topic that reaches way beyond cosmetic surgery and doping for athletes: “Sooner or later, everyone will have to make choices about whether to tinker with their appearance or performance. If only because others are already doing so.” 

The social game, which will be free of charge, offers players three missions to choose from. In the first, your child takes part in a competition to enter a top five university. In the second, players are scientists competing for research funding for a cancer vaccine. The third option is to be an elderly person who has to prove they are mentally and physically capable of living independently. A team of players can either spend time in training or use enhancements – mild and radical – to accomplish their mission. 

These enhancements come at a price, though, mirroring real-life dilemmas. Ritalin is designed to improve concentration but are the side effects too risky? Deep brain stimulators are designed to improve moods, but what else do they do? What are the downsides of a superstrength robotic arm? Players are encouraged to think about the ethical dilemmas as they are interacting with the other members of their team. 

The desire for self-improvement won’t stop

Human enhancement technologies were originally developed as medical technologies for people with a disorder, but are increasingly being used by healthy people to improve performance or appearance. Well-known examples are Viagra and liposuction. In liberal Western countries, individuals can decide for themselves whether to use such enhancements or not. But what is the impact of these individual decisions for society as a whole? How does it change our ideas about what a normal human being is? And who has access to these technologies? What if a government uses enhancement technologies for collective goals, such as a safety and justice? Ira van Keulen: “Most of the public debate has been about doping in sports. We wish to invite people to think about the broader trend of healthy people using technologies to become smarter, fitter or more beautiful. After all, new technologies will keep being developed – and people’s desire to improve themselves will keep raising these issues.” 

The game will be available in January, through the iTunes AppStore. You can stay up to date via www.rathenau.nl.