The Chronicler's Web (TCW)

Published by DAN CALLOWAY on 18 December 2009 @ 00:56 UCT (With permission of Council)
by CRISTIANO STORNI, IOTC Workshop 5 Moderator

BRUSSELS, BELGIUM - Cristiano Storni holds a PhD in Information Systems and Organization at the faculty of Sociology in the University of Trento (Italy) and is now a post-doc research fellow at Interaction Design Centre. During his PhD Cristiano has studied Science and Technology Studies (STS), Actor Network Theory (ANT), Social studies of Information Systems (SSIS), Ethnography, Participatory Design and Organizational Studies. His original background is on HCI and Cognitive science (he is graduated at the University of Siena, Faculty of Communication Science). His PhD dissertation – Design in practice: on the construction of objects – is based on extensive ethnographic observations of design practices in different design domains and is based on a socio-technical muldidisciplinary approach. His current research interests concern the social shaping of technology, the concept of appropriation and the future of ICT in different domains such as Health Care, web 2.0, open software and hardware. At IDC, is leading the sociological strand in FutureComm, a national founded research program (PRTLI – FutureComm, Serving Society) aimed to explore the future of ICT services and products.

Since 2009, Cristiano has been a TCP member of:

• Open Design Spaces supporting User Innovation Symposium 2009
• Multiple Way to Design Research Conference 2009
• 2nd Irish Human Computer Interaction Conference – Dublin 2009
• ECIS 2009 Verona

 

Original call and workshop description

HC systems in western countries are currently undergoing deep changes in the organization and management of health care services and patient treatments.  Aging population and a concerning increase of chronic diseases combine with the development of new treatments and the rising demand of them. The shadow of a coming shortage of human resources and endlessly increasing costs ask for rethinking the systems to minimize hospitalizations, efficiently allocate specialized personnel, and reduce costs.

In this rather dark scenario the notion of patient empowerment, patient choice and self-care generate understandable enthusiasm and become phenomena of increasing importance along with the spread of self-monitoring networked devices, ubiquitous sensors, HC e-infrastructures and social networks. However the migration of technology and information from hospitals and expert practitioners to domestic spaces and lay patients may come at the price of a renegotiation of the relationship between the different perspectives in play. 



What is the role of the IOT in this changing scenario?



Will it reproduce a disease-centric model based on more sophisticated forms of epidemiological control and dominance of biomedical perspectives, or rather will it open up new forms of patient centric collaborations between lay [persons] and experts based on the co-construction of care? In many cases the problem to be faced is well known and the role of IOT might be that of supporting compliance and the work of experts (even if it might limit the active participation of patients). In many other cases we are confronted with different degrees of uncertainties and the IOT should not miss the opportunity to make room for open-ended dialogues that take advantage of the full participation of different ways to experience the disease.



Workshop



This workshop aim [is] to gather different perspectives and expertise to envision future HC scenario by bringing together practitioners from across disciplines.

Participants in the workshop will be invited to explore together possible worlds and how they might be constituted by addressing the role of the Internet of Things in the changing Health care scenario. The general aim is to understand together how the internet of things can shape future patients and HC stakeholders and how they can shape the internet of things. Participant will be invited to discuss scenario and to collaborate in practical design activities aimed to address issues for the future of medical products, services and infrastructures.

The outcome of this workshop will be the identification of challenges and suggestions for designers and policy makers.
Possible question[s] that can be addressed in the workshop:

• How to support compliance in complex treatments (when compliance is the problem, e.g. acute diseases and well-established treatments)?,
• How to support ‘research in the wild’ where patients become active actors in the exploration of new solutions (when things are more complicated as, for instance, in chronic disease, experimental treatments, etc…)?
• How to design instrument to allow experts to better relate to patients; concerns and to allow patients to better relate to the expert perspective?,
• How to give meaning and voice to the patient’s experience of illness, and how to generate collective learning around it?
• How to inscribe the medical and the social together in the Internet of Things? how to inscribe solidarity and social learning in the future of Health Care?

Report of the Results of the Workshop

The workshop ‘Reassembling health: exploring the role of the IOT’ took place at IMAL (Center for digital culture and technology) as part of the event ‘Are you ready for the Internet of Things’  under the sponsor ship of LIFT conference.

Workshop participants come from different background and brought different perspectives on the table (User Centered Design, Sociology, Interaction design, computer science and business). Cristiano Storni (workshop leader) set the frame of the workshop with an opening presentation focused on the role of the Internet of thing in the health care. In particular Cristiano wanted to bring the attention to the actual trend toward self and home care that today is often seen as a possible solution to some of the current problems in HC (shortage of personals, endlessly increasing costs, increasing of chronic diseases, etc…). Cristiano invited participants to explore the set of new possibilities that the Internet of thing can offer but also to reflect on the assumptions and connotations that might be embedded in the design of new self-care and home-care solutions. One of the points Cristiano made was that as soon as medical information, technologies and procedures migrate from traditional institutionalized settings and expert uses to domestic settings and lay use, the traditional biomedical model might become problematic and display serious limitations in addressing patients needs and their perspective. More specifically, it has been addressed that the traditional medical model (based on acute disease treatment, episodic care, biomedical and epidemiological reductionism (e.g. where numbers and measurable facts becomes more relevant than those that cannot be reduced to numbers); a strong and asymmetrical separation between experts and lay (that implies an asymmetry between the expert knowledge and the lay knowledge of the disease); the notion of compliance (clearly reaffirming the dominant position of the medical experts). This model is based on a notion of patient as a rather passive actor often treated as objects within the larger HC system. However, the actual trend toward self- and home-care challenges this model and asks for an holistic approach based on continuous care where patient become active actors in their care. What is the role of the IOT then? In order to provide an instance of the role that the IOT can play and to show the need to reflect on the assumptions embedded in the design of new self and home care products and services, Cristiano introduced the GlowCaps concepts (from Vitality, whose CEO David Rose was supposed to intervene from Boston – unfortunately last minute internet connection problems made this impossible). The GlowCaps concept nicely illustrates the potential of the IOT: it is a pill bottle cap wirelessly connected with a series of devices aimed to act as reminders for pill taking. The glow cap seems to really succeed to improve patient compliance especially when it comes to elderly people. It also notifies compliant behavior to a series of careers such as family members and doctors. However, the notion of the patient inscribed in the concept is still quite traditional (patient as rather passive, medically-centered compliance) and although the GlowCap can be of real help in case of acute disease or where compliance is the real problem, its assumption might also become problematic in different settings (such as in chronic disease) where patients are more active and compliance is not always and everywhere the problem.

The argument was therefore to explore how the future Health Care scenario might move from episodic, asymmetrical, acute disease and control-based interaction to more symmetrical and cooperation-based interactions between the medical experts and the patient. In line with the overall Council philosophy of rethinking the notion of end user, Cristiano has addressed the issue of patient active participation, and asked to reflect and discuss for a more holistic approach to care. This implies recognizing that a turn toward more active and participating patients might come only at the prize to renegotiate the social contract that regulate the interactions between patient and experts today in Western society.

How to address, think, envision but also talk of patient participation became the central topic of the workshop. Based on this premises, workshop participants were invited to introduce themselves and to generate a series of keywords concerning their interests and the questions and perspective they wanted to address in the discussions that will follow. A series of keywords and issues were listed and then selected. Two groups were formed in order to specifically address the two sets of issues through brainstorming and scenario development. The two series of issues were respectively:

Main topic: Active patient and patient participation.

Group 1 dealing with:

- New approaches to chronic disease;
- Lay-professional expertise (rethinking their relationship);
- New organization of medical services;
- Prevention and self-prevention.

Group 2 dealing with:

- Understanding settings (home/hospital);
- Paradoxical effect of Technology in HC;
- Social inequalities in domestic environments;

Group 1 – An, Cristiano, Matthias, Peter, Wouter, and Wytse

The separation between experts and lay people has been openly addressed and so the question regarding the very notion of expertise. Who is the expert on a particular disease, especially on the growing category of chronic diseases? The specialist – whose knowledge is constructed ‘in-vitro’ through laboratory’s tests and a series of clinical trials based on few random cases – or the patient – who experiences the disease on a daily basis? This aspect also relates to the distinction (made in group 2) between the emic and the etic perspective (also coupled with the one between patient-as-object/patient-as-subject), and to the need to better understand which point of view (if any) should be privileged in future design.

The IOT and the increasingly growing diffusion of sensors and of mash-up applications afford the idea of crowd-sourcing the gathering and production of data to the patients in order to gain better knowledge on the disease and its prevention. As one of the participant reasonably claimed: would not be better to have data from 50.000.000 real cases than from a few dozens of artificial ones? The Internet of Things can be a powerful enabler for this kind of process (as some of the experiences of crowd-sourcing from different fields have already shown), and it can provides the means to produce more information to take better care decisions. However the idea of data crowd-sourcing generates a series of issues (ethical, organizational etc.) that need careful reflections.

First of all, we are confronted with the issue concerning the very nature of the gathered data (what data should be gathered?). In the context of prevention this issue is even more compelling as the question become: shall we gather data that we already believe might have an impact on certain diseases, or shall we allowed for more open(ended) data gathering?

The first way might simply ended up reaffirming and strengthening the already established medical knowledge and perspective thus narrowing the chance to expose new alternative possibilities to analysis. The example of breast cancer research is paradigmatic in this case. According to brown et al. (2006) the biomedical and epidemiological understanding of the disease privileges (if not reduces the disease to) individual (e.g. genetic) and lifestyle factors. However, as some literature on patient associations shows, patients have started to gather lay data showing that environmental factors are extremely (if not more) relevant. Still the medical community fails to acknowledge these findings because evidence is not produced according to their standards. We believe that this is a problem and that the IOT can give a stronger voice to alternative views. This might show the second way for the IOT to play a role in the future Health Care where patients can be active not only because they actively produce data but also because they can decide what data to gather, what matter from their perspective, what they discover by living with the disease on the daily basis, and so on.

This approach might be extremely helpful in the case of prevention (another of the topic of group 1). Most of the participants in Group 1 agreed that to allow people to gather data that goes beyond the actual state-of-art of epidemiological knowledge might be the way to go. However, it has been noticed that this aspect opens up to further problematic issues, in particular: the issue of having un-controlled and possibly harmful knowledge spreading and producing unsafe patient practices; the issues of when to start gathering data, the issue of how to analyze these data, and the issues concerning the ownership of these data.

The first issue is quite concerning. However, for some participants, that could be a false problem. The case of Wikipedia shows in fact that ‘malicious knowledge’ tends to die down in an open system where people can intervene and freely comment on other people’s claims and findings. Similarly, controversies in the exploration of new knowledge on treatments or preventions can be either solved or, at least, made public and explicit by adopting a similar model. It is clear that what is addressed here is that medical science will be more and more under the public scrutiny.

The second issues trigger a discussion around the notion of motivation. If we want to crowd-source data gathering regarding the prevention of certain disease we should start gathering data before the disease appears. This means infusing a culture of self-monitoring in every citizen. However self-monitoring can be a really demanding task and so new way to motivate people has to be envisioned (on this aspect the group point to a series of principles such as: the need of different motivators for different people, the need to make it playful, and reasonably doable).

The issue of how to analyze the enormous amount of data that can be gathered in this situation is tricky as well. The problem here is that, the original problem of reducing the disease to traditional and dominant bio-medical and epidemiological terms might not be solved but simply postponed and reproduced at the level of data analysis through data miming algorithms that embed the same traditional perspective. Again, an example from the current scenario in the democratization of technological innovation suggests a possible solution to be explored through the infrastructure of the IOT. Data mimi-ing algorithms should be visible, open source and data freely accessible (although anonymous for clear reasons). This can make room for different and parallel (not necessarily centralized) ways to analyze the continuously evolving data sets. More than being black-boxed in proprietary data miming algorithms (that might reify a different agenda), data analysis can open up to more dialogical, patient centric and democratic way to explore how to prevent and treat the disease.

The last issue related with the ownership of data is related with the one just mentioned. We acknowledge that make these data public and freely available would allow anyone to re-appropriate them (companies to seek business opportunities, public agencies and patient associations in order to generate new medical knowledge and produce real threats analysis). An experience reported by a responsible from a big corporation showed that what prevents companies to allow patients exporting their data for unanticipated purposes might be not a way to retain power over users, but rather simply a cultural aspect (again a tradition that we might want to rethink). In particular, the participant showed a device (kept in his socks) that monitor physical activity and visualize them in order to suggest whether the individual should do more exercise or not (btw another good example of what the Internet of Things can do). Produced data are automatically uploaded to a central server owned by the company. Users can obviously access their data in the server. However, they cannot export them. We acknowledged that this prevents people from appropriating their own data on physical activity and use them by, for instance, combining them with other data they have. What we learned is that the corporation simply keeps the data because: ‘that is the way we have always done that…we have nothing to gain to keep the ownership of those data, it was just handy for us to build our server to support this service’ (my paraphrase). We all acknowledged that changing these traditions could produce more innovation with no harm for the companies that host these data.

Another discussion in the first group occurred. It concerned once again the relationship between lay and professional expertise, but this time the issue was addressed in the context of the doctor-patient consultations (an interaction that might be strongly impacted by the new HC scenario the group had discussed so far). The traditional consultation in medicine is in fact vertical and based on a strong separation between the doctor and the passive patient. In this way, current consultations often afford a marginalization of the patient perspective to the reproduction of the traditional understanding, and the detriment of collective learning. In the new scenario, the group agreed that the IOT can support patients to produce evidence in order to strengthen their perspective in the medical encounter. However, to make the doctor interested in lay-produced knowledge and evidence became a central problem.

We all acknowledged the need of a sort of common currency to allow doctors to better relate with the patient concerns and the patient to better understand the professional perspective. The need is in fact to combine and reconcile different point of view in the dealing with the disease. Back to the issue of motivation, it has been noticed that, if enabled with the right tool, many patients would be way more motivated than their doctors to investigate alternative possible solutions. Again how to translate these lay concerns and the evidence patients can produce into a common language might be one of the central challenges of the new health care system.

During this discussion a series of nice concepts addressing the variety of ways of knowing and discussing the disease also came up. For instance, anyone knows the many lay-tips to deal with specific diseases especially coming from older generations. Some of these might be absolutely useless (if not harmful) and based on superstitions while some other can simply work for reasons that we do not know yet or the we have simply forgot. ‘Prove your granma right’ can be then a sort of P2P community where people share and test lay medical knowledge to deal with specific problems. Such community can again collectively select good suggestions from dangerous ones by distributing the work of reviewing and reflecting on them. The web and some of the health 2.0 realities already show that how this is happening. Again, to see how the traditional medical establishment would react to this has to be understood.

Another very interesting idea came up in order to address the strong asymmetry that many patients experience during their consultations (especially with specialist doctors) where the two different domains of knowledge (lay and expert) often seems to compete rather that integrate one another (as also Santucci mentioned in his presentation: doctors often do not even look at patients eyes during the consultation). In a provocative way, we asked what would be to have group consultations where more than one doctor as well as more than one patient or caretaker partakes. In this way the lay knowledge could find a bit of support and have a stronger voice during the consultation. At the same time, patient can have interactions with different specialists who can also relate to one another (currently the burden of reporting from one specialist to another is often on the patient). This form of participation can be supported by tele-conference technology and might allow for mixed interaction based on co- and mediated-presence.

Group 2 – Liam, Enrico, Niels, Pascale, Peter

The second group addressed a different series of issues and keywords that also relate with Cristiano’s presentation. In particular, the discussion has focused on the role of design in the shift toward self and home care technology and practices (What is the role of experts and lay people in the design of new care services?). The central concern was the need to better understand the spatial and social settings: the role of the new physical spaces of patients homes, the necessity to unpack the house, and to understand the domestic practices and issues related with care. The group did not focus much on technology per se, but rather emphasize the need to understanding settings, how to describe them, and how to deal with their heterogeneity. 

One of the central points in the Group 2’s discussion was the very notion of home and the need to unpack some of the assumptions that characterize the current discourses on self and home-care. It has been pointed that the notion of home is often linked with the idea of comfort, coziness and relax. Even Cristiano’s argument of showing how the medical model might conflict with lay and home environments could risk to tacitly assuming this definition. However, for many people home is not necessarily and always comfortable, safe or under control. For many people home can become troubling and messy: there might be too many people, there might be conflicts, and there might be tensions. In some cases, new technologies and procedures for home and self-care might not find the much-idealized nice and quiet place that we often think of when we talk about homes. On the other side, these new technical guests in the house can relevantly change the original atmosphere and disrupt the domestic balance. This has implications for the way we envision new solutions and the role of the Internet of Things and the too easy augmentation of every single object that it affords. Moreover, home might display quite strong and unexpected social inequalities across people with different socio-economical backgrounds and class and ethical issues should be addressed (what are the moral and ethical issues of a shift toward self and home care?). Participants recognized that home, as a notion, refers to a variety of different situations whose heterogeneity and complexity has to be explored and addressed in the design of future solutions.

Some practical aspects were mentioned such as, for instance, people having to keep medicines in particular spaces far from, say, grocery or away from children. The group discussed the need to go beyond the idea of the house as necessarily safe and adequate for self-care. There is a need to better study and understand its criticalities and how its fragile nature that might conflict with the logic of empowerment. Moreover, even the idea of medical information and technology migrating from hospitals to homes (as in Cristiano presentation) might be an oversimplification. More than a duality, we instead have a sort of progression where many other spaces play a role (these can be the pharmacy, the gym, the rehabilitation centre, the workplace, and so on).

The issues of understanding the home setting has been also explored in terms of the personal relations that characterize domestic environments also with a focus on the already mentioned distinction between the emic and etic perspective, and the difficulties to reconcile them. A trend toward self and home care will definitely redefine and change the network of care: new interactions and interdependencies with more or less formal and institutionalized carer will emerge. In this context, the notion of delegation in the home setting has been also discussed. While participants recognized that some people really want to be empowered and take responsibility for their care, some other might not want such responsibility and prefer to delegate and being told what to do. The traditional system affords a passive patient and some might find themselves comfortable with this traditional setting where the responsibility is delegated to the doctor. Moreover, it has been noticed that lay delegation in new domestic environments might instead become more problematic than expected, and we should not take that for granted in the design of new technological solutions. Partly inspired by the GlowCap concept, group 2 participants discussed the fact that delegating to other family members or friends or neighbors to act as supervisors might create new conflicts. Novel and quite problematic conflations of roles can be generated in the new settings with possibly problematic effects. As patient, we might feel uncomfortable delegating such responsibility or power to certain family members. On the other hand, as carer but also as friend and family member, we might want to play the role of supervisor occasionally, but we might also want to change these roles and not being trapped in conflicting situation. It has been acknowledged that these new roles can be played for sometimes but maybe not always. Some actors will probably experience the mentioned conflation of role with more or less problematic effects. Certainly, new interdependencies and forms of delegations have to be experimented. The role of the Internet of things can be central. In this context the role of social research in supporting design aimed to good care become a central too also for the education of next generation designers in the care setting.

To conclude both group have worked and discussed together to explore some of the issues raise by Cristiano and follow his invitation to think of the assumptions and connotations of the technological solutions – being them already in the market or just envisioned in a design scenario.

At a general level, we came to acknowledge that many current ‘supposedly innovative’ solutions in the HC systems seems to simply enhance and – at best – make the current system slightly more efficient. We have tried to explore what it is to have the IOT configuring a more active patient and we saw that this might pretty often require to rethink the current medical paradigm and to substantially reassemble the current health system at the level of education, research, and service management. We saw how this might imply questioning the current medical model and its authoritative underpinning. However, we also started to unpack some of the problems related with a more active patient and the home as the place for future care. We saw that the IOT can do much to readdress many of the problems we are experiencing today, and help us to design toward a better and healthier future. In a way, the two groups let a common issue emerge from the discussion as the real challenge of the future Health Care systems.

This is the challenge of the heterogeneity of the notion of patient (as an active actor in care) and of the notion of home (as a possible new space for care).

Many questions remain open. The two groups made a remarkable job in starting a much-needed dialogue between representatives of design and computer sciences, social science and business companies. The time was limited. We could not aim to [accomplish] much more.

Hopefully that was just the beginning.

Cristiano Storni, Brussels,
4th of December

If you enjoyed this post, make sure you subscribe to my RSS feed!