Proceedings of the 2013 IEEE 17th International Conference on Computer Supported Cooperative Work in Design
How the Crowd can Change Collaborative Work in Patient Care Evaluation and Perspective Scenarios for Medicine 3.0 Carla Viana Pereira (1), Maria Gilda P. Esteves (1), Sergio Palma J. Medeiros (2), Jano Moreira de Souza (1), Marcio Antelio (1,3) 1
2
COPPE/UFRJ, Graduate School of Engineering, Federal University of Rio de Janeiro, Brazil DEL-POLI Dept. of Electrical Engineering, School of Engineering, Federal University of Rio de Janeiro, Brazil 3 CEFET-RJ, Federal Center for Technological Education Celso Suckow da Fonseca, Brazil {cvpereira, gilda}@cos.ufrj.br;
[email protected]; {jano, marcioantelio}@cos.ufrj.br billion people were Internet users which represented nearly 30.2% of the world population.
Abstract— The medical paradigm is leaving the traditional doctor-patient relationship, i.e., the physician-centred model and evolving towards a new de-centralized model where patients are given more responsibility for their health. This article seeks to understand what is changing in this relationship and what role the Web and the interconnected crowds of people play in this state of affairs. Our work discusses the evolution of the Web, how it is changing Medicine and the way patients are reaching to health information, and presents a new approach for Medicine 3.0 and its prospective scenarios. This transition has been changing the interaction between doctors and patients. Patients have become more social and responsible for their own health, adopting new communication channels and interacting with other patients and stakeholders distributed all over the world. In this new health care context, the premise whereby many people are eager to contribute by sharing health information, anytime and anywhere, should be included in the design of new technologies to support collaborative work in healthcare. To assist in this, our paper discusses how the new crowdware systems is supporting a multitude of Web-based collaborators interested in Medical Care, showing some examples of its application, taking into account all the stakeholders: doctors, patients, laboratories, hospitals, and apomediators.
One area where the Internet is being more widely used by this crowd of users is Medicine. An international study conducted by the Thomson Reuters agency showed that, on average, 53% of the searches done by U.S. citizens aim at obtaining health-related information [4]. In another survey, conducted in 2010 by the Pew Internet Project, part of the Pew Research Center, it was found that 80% of American adult Internet users perform searches for health-related data [3]. With the advent of Web 2.0, new terms arose such as Medicine 2.0, PHR 2.0 (Personal Health Record), Health 2.0, Social Health, and e-Health, that seek to study this new form of interaction that goes beyond the traditional doctor-patient relationship. In this new model, the distance between two people who seek for the same information or a solution to their health-related issues decreased and there a new type of patientpatient interaction came up. The rise of social networking platforms and applications created new levels of patient participation, as well as unique and unprecedented opportunities for engaging patients in their health, health care, and health research, and for connecting patients with informal and formal caregivers, health professionals, and researchers [6].
Keywords: Medicine 2.0; Health 2.0; e-Health; crowd; crowdware; crowd computing; collaborative work; CSCW;
I. INTRODUCTION The Internet is an important tool to find information. Before the Web, information was available in traditional sources such as books, encyclopaedias and publications; nowadays, it is online, just a click away from the citizen. The Internet blends benefits such as low cost of access, ease of search, speed of response and high availability, which make it increasingly present in our daily lives. Besides, the Internet also provides a powerful communication channel for its users. Web 2.0 platforms such as social networks, blogs, groups, forums and communities allow citizens to interact with others with common interests or affinities, breaking down geographic, political, and social barriers.
This article aims to study the evolution of the healthcare model through the introduction of new crowdware tools, technologies, and roles, to understand the current situation of this model and envision future paths for collaborative work in patient care. II.
According to The World Bank [1], in 2010 about two
978-1-4673-6085-2/13/$31.00 ©2013 IEEE
THE CROWDWARE SYSTEMS
The term crowdware takes inspiration in groupware, which suggests principles and ideas on communication and collaboration within a shared context that help a group to accomplish a joint task [16]. Crowdware systems introduce new awareness contexts where the crowds can communicate, collaborate and interact in a variety of online activities and tasks.
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Crowdware can be described as a class of systems to supporting virtual and real crowds, inherriting the main components of groupware, along with Webb 2.0 and Cloud Computing, to provide advanced servicess anywhere and anytime, connecting people in heterogeneouus domains [15]. Blogs, wikis, social network services, W Web-based crowd collaboration systems, and ‘smart artefacts’ (non-traditional work, i.e., tablets, computer-based devices that allow mobile w smartphones, pervasive, and wearable heealth monitoring systems) are all forms of crowdware. III.
Patient
Information
Figure 3. Reaching informatio on: Disintermediation
A special form of disintermeediation is Apomediation. From the Latin apo meaning ‘to o stand by’ or ‘next to’, apomediation is an academic terrm for ‘social mediation’, proposed most influentially by Guntther Eysenbach [5]. Apomediation means that theree are agents (people, tools) close by, replacing the figure of the professional, to guide patients to services and information available on the Web, filtering low quality or questio onable information, thus allowing the patient to access high quality q information.
FROM MEDICINE 0.0 TO MEDICINE 2.0
A. Medicine 0.0 This is the most traditional model, based on a closed and hierarchical health care system [6]. In this pphysician-centred model, the health professional stores the patiennt’s health data. Health professionals generally use differeent approaches to manage their patients’ medical records, seldom using Information Technology resources.
Patient
Information
Figure 4. Reaching informattion: Apomediation
A cancer patient may, for ex xample, initially prefer an intermediary to satisfy one’s infformation needs, but with growing autonomy, self-efficacy, and knowledge, the same patient may later prefer Web 2.0 ap pproaches to guide him/her to information deemed trustworthy [6].
Patient Health Expert
B. Medicine 1.0 he 2005 Hurricane Katrina The disaster in the wake of th exposed the fragility of the inform mation infrastructure in US health systems. When faced with a hurricane, a flu pandemic or a bioterrorist attack, citizens should be able to depend on reliable access to information aboutt their health.
Figure 1. Medicine 0.0: Physician-centredd model
As the Web evolved from Web 1.0 to Weeb 2.0, the forms of interaction between doctors and patientts and the ways patients reach health information also evolvedd.
The recent years have seen a notable increase in the promotion and adoption of Perso onal Health Records. The authors define PHR as an elecctronic application where individuals can access and manage information on their health in a private, secure and confiidential environment [8]. Medicine 1.0 is a patient-centred mo odel.
In this new context, we can say that theere are two main paths for patients to reach information: inttermediation and disintermediation. Intermediation The most common form of access to heallth information is though the intermediation of acknowledged exxperts. This way, the patient needs the health professional to geet the information they want. The professional provides the ‘releevant’ data to the patient, acting as a broker between the patient and the information.
Patient Health Expert
Figure 5. Medicine 1.0: Pattient-centred model Patient
Health Expert
Informatioon
1) Roles and Responsibilities: In this model, the patient centraalizes the information about one’s own health: they are created by and are kept by patients who grant permission for their usee to institutions, clinicians, researchers, public health agencies and other users of that data [6]. The information is stored in eleectronic format and there is an attempt to standardize the data so that it becomes portable and platform-independent.
Figure 2. Reaching information: Intermeddiation
Disintermediation In the second form, called disinteermediation, the intermediaries are removed from the supply chain. Examples are patients seeking information in the Internnet. The problem with this approach is that the patient can gett lost in the data jungle and may become misinformed [6].
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2) Communication and Coordination: The interaction between the patient annd the specialist extends through the support of communication tools such as video conferencing, instant messaging and chaat.
Medicine 2.0 applications, serrvices and tools are Webbased services that use Web 2.0 technologies t for healthcare consumers, caregivers, patients, health professionals, and biomedical researchers [6].
3) Difficulties and Impacts: a) Difficulties: Patients without accesss to computers; Patients with low levels of familiarly withh PHR Systems; Patients with physical limitations; Patients w who reject having their personal information on electronic formaat. b) Impacts: Incomplete patient Health Innformation.
The most important contributio on of the Web 2.0 to the health domain was a great paradigm m shift. There was a break in the initial idea that citizens weree merely passive consumers of information. The crowd of userss of the great network was eager to collaborate and the contrib bution of the online crowd was valuable and should not be neglected. A. Web 2.0 Principles The term Web 2.0 was proposed d by O’ Reilly in 2005. We can visualize Web 2.0 as a set of principles p and practices that harness collaboration and health edu ucation (fig. 7):
C. Medicine 2.0 The term Medicine 2.0 was coined bby Dr. Gunther Eysenbach to denote all medical practices thatt use the Web 2.0 technology. Some other terms are also useed for the same purpose such as: Health 2.0, E-Health, and PH HR 2.0 (Personal Health Record) [11]. Patient Health Expert Researcher
Figure 7. Web 2.0 principles. p Figure 6. Medicine 2.0: De-centralized M Model
1) The Web as a Platform: Applications identified as Web 2.0 follow the paradigm of delivering online services rather th han products. Releases and updates with continuous improvem ment became transparent to the user, applications turned platfform-independent and free from license fees.
There are three main user groups in Mediccine 2.0 where, in addition to patients and health experts, researchers also interact in this model. An ideal application off Medicine 2.0 is one that connects the three different usser groups and encourages collaboration amongst these groupps [6].
2) Architecture and Collaboration:: The Web 2.0 applications ado opted an approach named ‘architecture of participation’ to give g power to the user to interact, modify, and create conten nt. Some characteristics of this architecture are: simplicity of usage, u immediate feedback and the valuing each user’s contributions [14]. The architecture should encourage colllaborative work providing tools to engage the users and deliverr rich user experiences.
1) Roles and Responsibilities: The idea behind Medicine 2.0 is to producce less rigid roles between users [11]. A health professional is an expert in identifying a disease, while the patient iss a specialist in experiencing the disease [6], the contributiion of both can generate new knowledge and discoveries. 2) Communication and Coordination: m hospital-based Medicine 2.0 seeks to move away from Medicine. Health systems should focus on ppromoting health, provide healthcare in people’s own homess, and empower citizens to take responsibility for their own heaalth [6]. 3) Difficulties and Impacts: a) Difficulties: Patients use the Interneet to find health information and step into clinics with preeconceived ideas about their health; Patients publish their ow wn experiences in Web 2.0 applications; Patients exchange eexperiences with others. b)
Impacts: Patients are misinformed. IV.
CINE 2.0 CHARACTERISTICS OF MEDIC
In Web 2.0, the user is seen as an active contributor, and content is created by participation and colllaboration as an emergent product of human interaction [10].
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Harnessing Collective Intellligence: The core principle behind the success of the giants g born in the Web 1.0 generation, who survived to lead the Web 2.0 age, appears to be that they havee embraced the power of the Web to harness collective in ntelligence [9]. The Web is now seen as a kind of global brain, websites of search engines are looking for stru uctures of links existing on the sites rather than just look king at the characteristics of documents.
•
User-Generated Content: The dynamics of content creation in Web 2.0 chang ges a lot and users become active producers of content, starting to play a key role in many applications. Wikip pedia is the most important example of an application n based on user-generated content.
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forums, blogs and portals to provide health information, exchange experiences and offer support. Patients Like Me (http://www.patientslikeme.com), for example, is a social network where patients can search for others using a particular drug or a specific treatment one may be undergoing.
Network Effects: A network effect of user contributions is the key to market dominance in the Web 2.0 age [9]. Web 2.0 applications are no longer dependent on vendors, users can easily switch from one service to another, and network effects start to become important reasons to motivate consumer loyalty and collaboration.
Type of Information Exchange: patient–patient, patientphysician, physician –physician.
3) Openness:
V.
Information is freely shared by all. Openness means transparency, interoperability, open standards and interfaces. The data should be open and shared through APIs.
MEDICINE 3.0 – PROSPECTIVE SCENARIOS
The third generation of the World Wide Web, called Web 3.0, still does not have a clear definition. The term appeared in an article written by John Markoff, published in The New York Times in 2006. The author mentions some start-up companies that were searching for new ways to mine human intelligence. Their goal was to add a layer of meaning on top of the existing Web.
The rise and broad adoption of Web 2.0 principles and approaches coincides with the rise of Medicine 2.0. B. Medicine 2.0 Landscape A wide range of Medicine 2.0 apps is available and more applications launch every day. Meaning to understand the Medicine 2.0 scenario, we proposed four main types of applications based on their purposes and kind of interactions, as described below (fig. 8):
Tim Berners-Lee, the expert responsible for the core principles that gave origin to the World Wide Web, coined the term ‘Semantic Web’. The author believes the Web 3.0 should be called World Wide Database, where we can make very sophisticated and complex queries [20]. Nova Spivak, founder of Radar Networks, advocates that the semantic Web will play a central role in Web 3.0, the author defends that we are going from a Web of connected documents to a Web of connected data [20].
Figure 8. Medicine 2.0 Landscape.
Although semantics seems to be a necessary part of the next generation of the Web, experts also describe other sets of characteristics and technologies that will be important to push the next generation in the Medical scenario, such as artificial intelligence, emphasizing information understanding, where the information has to be structured in such a way that machines can read and understand it as much as humans can, with no ambiguity [21].
1) PHR (Personal Health Record) In the first type, we grouped applications that mean to organise medical records in one single place. Medical records are created by and reside with patients who decide who can see, use and add information. Patients can track prescriptions, lab results, allergies and other kind of health data. We can mention Microsoft HealthVault (http://www.microsoft.com/engb/healthvault) and Dossia (http://www.dossia.org) as main representatives of PHR applications.
Medicine 3.0 faces some challenges such as improving the access to health-related data, adding contextual meaning to the searches, fostering the creation of supportive virtual communities, encouraging the participation of the crowd, developing innovative tools for digital healing and using pervasive and ubiquitous technologies.
Type of Information Exchange: patient-physician 2) Integrated Health Management In the second type, we find applications that provide a complete platform where, apart from arranging one’s medical records, the patient can also use tools of coordination and communication to schedule appointments online and communicate in real-time using video chat and instant messaging with the specialists. Hello Health (http://hellohealth.com) is a good example of this type of application.
A. Searching and Sharing Knowledge Despite of the availability of Web search engines, health experts, researchers and patients seem to be on the verge of an information overload crisis, in the middle of endless amounts of disorganized information distributed in the Web [7]. Presently, the information in the Web is non-structured. Web search engines look for Web pages that contain the keyword informed in search terms, and do not identify if the result is actually relevant for the search. Another problem is the use of synonymous and generalizations, such as: a patient searching for information on ‘heart attack’ can use the term heart attack, heart disease, infarct, or myocardial infarction and get different results.
Type of Information Exchange: patient-physician. 3) Decision Support In the third type, we saw applications that boost decisionmaking, fostering collaboration and communication amongst specialists. SERMO (http://www.sermo.com) is a community, exclusive to physicians, where they can discuss treatment options, exchange insights and seek expert advice.
The Medicine 3.0 knowledge search engine should interpret the context of the request, the information retrieval should be less based on keywords but supported by intelligent frameworks based on ontology [7] and natural language
Type of Information Exchange: physician –physician. 4) Access to Information In the last type we found a variety of applications such as
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examples of application-specific medical systems listed by [18] are wristbands to monitor pulse rate, body temperature, galvanic skin reactions, electromyography (EMG) data, and chest and arm belts for physiologic monitoring.
processing. B. Crowd content creation The traditional doctor-patient model and the episodic care in clinic and hospital are below an optimal level to improve disease treatment outcomes. Some chronic diseases such as diabetes and asthma need daily support. Mobile communication devices, in conjunction with the Internet and social media, provide opportunities to enhance disease prevention and management by extending health interventions beyond the reach of traditional care [17].
Health monitoring systems must be developed to allow online assistance and also support the massive volumes in collection, storing and aggregation of data for later analysis. E. Protecting patient privacy The advent of Medicine 2.0 has resulted in the emergence of many user-centric devices, applications and platforms facing health information. Patients become more involved with their healthcare and start storing their health data online in personal health record systems or looking for online support and medical advice from other patients with similar diseases or treatments [2].
In Web-communities such as ‘Diabetic’ and ‘patientslikeme’ patients report their symptoms, side effects, and discuss new practices and solutions. All the daily life outside traditional clinical settings is important to determine and adjust treatment by the clinicians [17].
This new age of applications enables users to contribute and generate content about their own heath, creating a history of their activities. As times passes, more and more content is created and stored.
The new paradigm of Medicine 3.0 is lowering the barriers to reach, share and create knowledge, and the new era of crowdware systems is opening a huge space for the development of a broad interface as well as a community of patients, clinicians, family, and other stakeholders. Medicine 3.0 seeks to be more personalized and pervasive, i.e., users can not only ‘read and write’ but also execute, through the use of different, fully connected, devices, anytime and anywhere. Collaborative and participatory CSCW design is providing new crowdware tools to extend care into the daily lives of families and communities.
This evolution raises new privacy issues as more patient health data becomes accessible to more individuals and these parties have become the custodians of a rapidly increasing wealth of data delivered by the users. Personal health information is extremely valuable. The unauthorized disclosure of this type of data can produce serious consequences for an individual, ranging from social embarrassment and dissolution of relationships to the termination of insurance and employment contracts [2].
C. Geospatial content creation – Global health monitoring Monitoring the health of citizens and epidemic outbreaks as well as neglected diseases is a concern of every Government and has global importance in the sustainable balance of the planet. Monitoring and pre-emptying the rise of epidemics is one of the challenges of the 21st century in an overpopulated world. Nowadays, the global population is reaching 7bi people on our planet and any disorder can lead to serious health consequences. Developing mobile devices and persuasion mechanisms that allow mass collaboration is one of the CSCWD challenges. Crowdsourcing is a real solution to reach a unified view of the current stage of our global health. Health Map (http://www.healthmap.org) is an example of crowdsourcing platforms aimed at tracking geographic disease outbreaks and surveillance of emerging public health threats in real time. The Health Tracking Network (http://www.healthtracking.net) is a collaborative map that monitors and prevents influenza, the common cold, and stomach flu. Creating, saving, sharing and commenting alerts and outbreak warnings on maps is a simple action that can help monitor what is happening everywhere and provide support to health officials in the fight against the spread of local and global epidemics.
In the context of Medicine 2.0, we can correlate privacy to the choice of the patient to enable access to one’s health data to researchers, other patients, physicians, or the public. Main privacy risks are: unauthorized or non-anticipated use of patient health data and collection and disclosure of personal information. As more personal health data is collected and stored, through user input or collected by sensors, more attention should be given to avoiding privacy violation. This issue is a challenge Medicine 3.0 must face. F. Improving Information Quality Increasingly, experts are faced with patients who get information in the Internet and the communication during the consultation is influenced by the patient having researched content on the Web. As a result, experts, researchers and consumers of health care are concerned about the quality and accuracy of the data available online [13]. A patient who makes decisions based on incorrect information may aggravate one’s health condition through the use of incorrectly medication or even with the decision of not seeing a doctor. Even if doctors devoted a lot of effort to reviewing and assessing content available online to suggest the right websites to their patients, content and website addresses can change rapidly and one’s recommendations could become outdated.
D. Sensors and online monitoring In this topic the main challenge is to develop pervasive and wearable health monitoring systems integrated into a telemedicine system. This is a novel area for CSCWD design technology that will support the early detection of abnormal conditions and prevent serious consequences for patients. A collaborative technology in health care provides real-time health monitoring through wireless technologies. Some
A better approach would be to empower patients so that they could assess content online. One initiative that follows this principle is the project funded by the European Union
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called MedCIRCLE (http://www.medcircle.org). The goal of the project is the classification and evaluation of health content made available in the Internet. The site offers a toolbar that is added to the client browser, where a tool allows searching for information with quality evaluated by experts and other patients.
[3]
[4]
[5]
Another approach is the Qualitocracy framework presented by Antelio M. et al [19]. They provide an alternative approach to validate data quality in collaborative scientific projects, exploring the collaboration of users in a social network through a voting network. By associating data quality dimensions to scientific expertise domains through a voting network, a continuous process is created for data quality validation. VI.
[6]
[7]
[8]
CONCLUSION [9]
Traditional Medicine still follows the classic paradigm of the physician-patient relationship. This paradigm, also called Medicine 0.0 in this paper, has undergone changes over the years.
[10]
Medicine 1.0 introduces a major change: the patient becomes the owner of one’s health data. The medical advances include the concepts of Web 2.0 where the patients begin to interact and exchange information and create collaborative health knowledge. Medicine 3.0 promises to bring a new era of personalized health care and relies on the benefits that Web 3.0 will introduce.
[11]
[12]
The authors see Medicine 3.0 as a personalized, intelligent, sensitive and living network created and sustained by a seamless engagement of a crowd of patients, doctors, researchers, pharmaceutics, as well as many others connected users interested in give and receive, support and share information. It is a new era for the Web: ‘Web everywhere’. Everything is connected to the Web with new research methods.
[13]
[14] [15]
Doctors should break the boundaries of the traditional system and embrace this new model, where patients become responsible for their own health, adopting new communication channels and interacting with other patients around the world. Communities of practices, social networks, wikis, geospatial content creation and distributed applications such as telemedicine and electronic patient records (EPR) are the new forms to support the crowd in their collaborative work in healthcare.
[16] [17] [18]
[19]
A CSCW designer should focus on the development of improvements to the way current crowdware systems moderate opinion, solve conflicts, and check facts more efficiently and in a pervasive way, to naturally bring together all the stakeholders: doctors, patients, scientists, enthusiasts, apomediators, laboratories, hospitals, the pharmaceutical industry and those involved with the decision-making processes of Public Health policies.
[20]
[21]
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