This document discusses the emergence of digital platforms that encourage patients to share their healthcare experiences online. It argues that while these platforms aim to provide support and information to users, patients' contributions have become commercially exploited. Specifically, the data shared on the platforms is aggregated and monetized by their owners. The document examines this "digital patient experience economy" through the lenses of prosumption, big data, and how digital interactions shape metric assemblages of individuals. It contends that while platforms give patients new ways to share their stories, their experiences have also become novel commodities.
Discussion: Call for new research – the emergence of ehealth & a health 2.0
This is an increasingly innovative area for research, design, commerciality and ‘everyday’ interaction. The area leads on from other discussions about ‘eCitizens’, website analysis related to ehealth (e.g. Clinical Websites that are ‘dangerous to health’ Roberts JM, Copeland, KL Int. Jnl. Medical Informatics 62 (2001) 181-187), or as a ‘Health 2.0’. To date, my own work reviews various online health portals as patients seek information about health and wellbeing as part of elective surgeries overseas (see Lunt et al. 2009). Part of the aim (and responsibility) of current research is to set up important questions and directions for possible future investigations.
Role of Social Media in Healthcare Domain: An Integrated ReviewIJERA Editor
The ever increasing role of social media now-a-days in people’s life created newer avenues for research in almost every domain. In the field of healthcare, social media and user-generated content are opening more opportunities for the researchers to kick-start their research by digging out patterns and trends from the millions of data points available and unveiling interesting correlations between the parameters that would affect the outcome of their research which would otherwise go unnoticed. Yet, there are some issues like ethical concerns, anonymity of data providers, and the apt approach to use the user-generated content, which have to be addressed through further research. The Hashtag project by organizations like Symplur Signals provides a free and open platform for the stakeholders in the healthcare domain that connects them to related communities and their conversations thus providing rich datasets of user-generated content for better research in healthcare social media.
Consumer health informatics for people who use AAC: Views on e-health records...Bronwyn Hemsley
Paper presented at the International Society for Augmentative and Alternative Communication (ISAAC) Biennial Conference in Toronto, Canada, August 8th to 12th 2016.
Discussion: Call for new research – the emergence of ehealth & a health 2.0
This is an increasingly innovative area for research, design, commerciality and ‘everyday’ interaction. The area leads on from other discussions about ‘eCitizens’, website analysis related to ehealth (e.g. Clinical Websites that are ‘dangerous to health’ Roberts JM, Copeland, KL Int. Jnl. Medical Informatics 62 (2001) 181-187), or as a ‘Health 2.0’. To date, my own work reviews various online health portals as patients seek information about health and wellbeing as part of elective surgeries overseas (see Lunt et al. 2009). Part of the aim (and responsibility) of current research is to set up important questions and directions for possible future investigations.
Role of Social Media in Healthcare Domain: An Integrated ReviewIJERA Editor
The ever increasing role of social media now-a-days in people’s life created newer avenues for research in almost every domain. In the field of healthcare, social media and user-generated content are opening more opportunities for the researchers to kick-start their research by digging out patterns and trends from the millions of data points available and unveiling interesting correlations between the parameters that would affect the outcome of their research which would otherwise go unnoticed. Yet, there are some issues like ethical concerns, anonymity of data providers, and the apt approach to use the user-generated content, which have to be addressed through further research. The Hashtag project by organizations like Symplur Signals provides a free and open platform for the stakeholders in the healthcare domain that connects them to related communities and their conversations thus providing rich datasets of user-generated content for better research in healthcare social media.
Consumer health informatics for people who use AAC: Views on e-health records...Bronwyn Hemsley
Paper presented at the International Society for Augmentative and Alternative Communication (ISAAC) Biennial Conference in Toronto, Canada, August 8th to 12th 2016.
How does social media fit into the ethical, legal and professional boundaries of oncology nursing? What are concerns and opportunities that an oncology nurse must be aware of when interacting with colleagues, patients and professional social media sites?
At the end of this activity, the learner will be able to:
State the ethical, legal and social justice elements of social media.
Describe how to integrate social media into the practice of oncology nursing.
Develop tools and skills to apply social media to the oncology nurses’ professional and personal daily activities.
Presented in February of 2014 to ONS Chapter meetings.
Social media research in the health domain (tutorial) - [part 1]Luis Fernandez Luque
Tutorial about the use of social media in the health domain. The tutorial is designed for healthcare professionals interested in eHealth. It was done for Weill Cornell Medicine - Qatar.
See the part II of the tutorial here: https://www.slideshare.net/IngmarWeber/social-media-research-and-practice-in-the-health-domain-tutorial-part-ii
Learn more about social media for health here https://www.futurelearn.com/courses/social-media-in-healthcare
Running head DOES MEDIA REFLECT CULTURE OR DOES IT CREATE CULTURE.docxtodd271
Running head: DOES MEDIA REFLECT CULTURE OR DOES IT CREATE CULTURE? 1
DOES MEDIA REFLECT CULTURE OR DOES IT CREATE CULTURE? 4
Title:
Student’s name:
Instructor:
Course:
Date:
DOES MEDIA REFLECT CULTURE OR DOES IT CREATE CULTURE?
Both media and culture are connected and they are inseparable. Various levels of understanding influence the contents of the media; on the other hand, platforms and contents of the media have a big impact on the day to day and cultural practices. One of the practices influenced by the media is the health-related decisions of individuals (Georgiou, 2017). Therefore, media has measurable effects which come as a result of the messages given by the media. We can, therefore, say that media both reflects society and shapes the culture.
Media reflect culture
Taking legacy media for instance, for a magazine dealing with fashion, in determining what ladies should and should not dress, they need first of all to mirror the present-day society so that they will be able to establish what the women want. Without doing this, the magazine will be nothing than common sense within a typical mind of the woman. This, therefore, means that the media has to establish certain things to do or not do which means they are reflecting the society (Berger, 2017).
Secondly, Legacy media depend more on society than society depends on them. Even if without the mass media the society would struggle getting news broadcast and entertainment, the society will still be alive but without the society, the media will not be there. They, therefore, have to reflect what the culture of the society wants.
For instance, there is this radio show which conducted a publicity stunt which shocked the audience, what followed was unanimous public reactions of condemnation from the public. The culprits engineered the stunt which was to push the boundaries of acceptable decency, but the reactions of condemnation caught them by surprise. This is simply because they failed to realize that society is much more conservative than they expected. The stunt itself as something of a mirror, but the society did not like what they saw. They believed that the stunt crossed the lie and the society cried out. The line that marks out the acceptable and unacceptable things is still clear to society, and the media just reflects it.
Media create culture
In another sense, the media pushes the boundaries of values, therefore, contributing to the shaping of the culture. The media is capable of controlling a whole nation if the media barons or political parties manipulate it (Fiske, & Hancock, 2016). The media sometimes cannot be trusted in giving out facts without slanting them in one specific direction of interpretation. The reporting offered is based on some hid.
How does social media fit into the ethical, legal and professional boundaries of oncology nursing? What are concerns and opportunities that an oncology nurse must be aware of when interacting with colleagues, patients and professional social media sites?
At the end of this activity, the learner will be able to:
State the ethical, legal and social justice elements of social media.
Describe how to integrate social media into the practice of oncology nursing.
Develop tools and skills to apply social media to the oncology nurses’ professional and personal daily activities.
Presented in February of 2014 to ONS Chapter meetings.
Social media research in the health domain (tutorial) - [part 1]Luis Fernandez Luque
Tutorial about the use of social media in the health domain. The tutorial is designed for healthcare professionals interested in eHealth. It was done for Weill Cornell Medicine - Qatar.
See the part II of the tutorial here: https://www.slideshare.net/IngmarWeber/social-media-research-and-practice-in-the-health-domain-tutorial-part-ii
Learn more about social media for health here https://www.futurelearn.com/courses/social-media-in-healthcare
Running head DOES MEDIA REFLECT CULTURE OR DOES IT CREATE CULTURE.docxtodd271
Running head: DOES MEDIA REFLECT CULTURE OR DOES IT CREATE CULTURE? 1
DOES MEDIA REFLECT CULTURE OR DOES IT CREATE CULTURE? 4
Title:
Student’s name:
Instructor:
Course:
Date:
DOES MEDIA REFLECT CULTURE OR DOES IT CREATE CULTURE?
Both media and culture are connected and they are inseparable. Various levels of understanding influence the contents of the media; on the other hand, platforms and contents of the media have a big impact on the day to day and cultural practices. One of the practices influenced by the media is the health-related decisions of individuals (Georgiou, 2017). Therefore, media has measurable effects which come as a result of the messages given by the media. We can, therefore, say that media both reflects society and shapes the culture.
Media reflect culture
Taking legacy media for instance, for a magazine dealing with fashion, in determining what ladies should and should not dress, they need first of all to mirror the present-day society so that they will be able to establish what the women want. Without doing this, the magazine will be nothing than common sense within a typical mind of the woman. This, therefore, means that the media has to establish certain things to do or not do which means they are reflecting the society (Berger, 2017).
Secondly, Legacy media depend more on society than society depends on them. Even if without the mass media the society would struggle getting news broadcast and entertainment, the society will still be alive but without the society, the media will not be there. They, therefore, have to reflect what the culture of the society wants.
For instance, there is this radio show which conducted a publicity stunt which shocked the audience, what followed was unanimous public reactions of condemnation from the public. The culprits engineered the stunt which was to push the boundaries of acceptable decency, but the reactions of condemnation caught them by surprise. This is simply because they failed to realize that society is much more conservative than they expected. The stunt itself as something of a mirror, but the society did not like what they saw. They believed that the stunt crossed the lie and the society cried out. The line that marks out the acceptable and unacceptable things is still clear to society, and the media just reflects it.
Media create culture
In another sense, the media pushes the boundaries of values, therefore, contributing to the shaping of the culture. The media is capable of controlling a whole nation if the media barons or political parties manipulate it (Fiske, & Hancock, 2016). The media sometimes cannot be trusted in giving out facts without slanting them in one specific direction of interpretation. The reporting offered is based on some hid.
Crowdsource Application A Pragmatic Approach for Participation in Healthcare...Ayesha Saeed
Retrieval and management of Web data is now a complex problem, due to huge amount of information, variety of the information sources, data formats, and developing expectations of users. Crowdsourcing is an online problem solving paradigm that is used to tap the intelligence of the crowd. This research covers the idea that the medical paradigm is leaving the traditional doctor-patient relationship and adopting the patient-patient relationship. Physician centered model is evolving towards a new de-centralized model where patients are given more responsibility for their health.
Social media is considered a new revolution in healthcare. The healthcare digital transformation doesn’t simply happen at night. All patients want to reduce the complexities and inconveniences of doctor’s traditional consultation. In this case the adoption of healthcare digital marketing is important for all healthcare users. We explain how social health revives the patient journey in the digital era. For better digital healthcare solutions, get in touch with experts at EMed HealthTech today!
COVID-19 & Personal BeliefsValuesThe COVID pandemic has had a tCruzIbarra161
COVID-19 & Personal Beliefs/Values
The COVID pandemic has had a tremendous effect on the worldview surrounding my current nursing work. While many of the realizations focus on the imperativeness of nursing it also exposed areas that could need improvement in the future. Therefore, the values I had placed before are now replaced by new ones and new avenues for progression are made clear. In this paper I will be exploring how COVID-19 influenced my values and personal beliefs while offering an example.
Personal Beliefs/Values
Due to the pandemic, more awareness is being brought to the crucial work that is done by nurses. This has highlighted certain aspects of the work we do as nurses and how we could further shape the way our care is delivered. While new information was being given surrounding the possible medical consequences of having COVID, I found a new-found value in relying on evidence-based information. Throughout this period, it was easy to fall into the pit of misinformation. However, we as nurses must use our critical thinking and examine the evidence to then apply it in our work. This would result in an inability to comprehend “the risk of being infected.” (Fernandez et al, 2020) Our patients rely on us to provide them with up-to-date information that is based on clinical evidence. This is how we can truly provide the highest standard of patient care. This newfound belief and important value have only been more pronounced ever since COVID had started. Importance can be greater appreciated when recognizing the need of the nursing staff to “meet the exponential increase” (Smith et al, 2022) laid by COVID.
Example
The case for establishing a strong reliance on evidence-based practice is most notable when having experience seeing the problem. Multiple instances at work I have seen my coworkers engaging in passing information that is not academically accurate. I had a fellow RN who could not answer COVID questions when asked of how the virus works within the body. Because of these moments I make sure to keep up to date with the latest from the CDC and academic sources.
Conclusion
In conclusion, the pandemic has opened my eyes to what values should be enhanced and where beliefs should be derived from. The need for nurses to educate themselves when a global disaster has been highlighted by countless instances where critical thinking is needed. Data that can be verified clinically is vital to continuing to provide better patient care and lead to better patient outcomes.
References
Fernandez, R., Lord, H., Halcomb, E., Moxham, L., Middleton, R., Alananzeh, I., & Ellwood, L. (2020). Implications for COVID-19: A systematic review of nurses' experiences of working in acute care hospital settings during a respiratory pandemic. International Journal of Nursing Studies, 111, 103637. https://doi.org/10.1016/j.ijnurstu.2020.103637 (Links to an external site.)
Smith, S. J., & Farra, S. L. (2022). The impact of covid-19 on the regulation of nursing p ...
The Internet and Health: Controversies and OpportunitiesIgnacio Basagoiti
In the present article we tried to approach the phenomenon of the access online to the sanitary information on the part of the citizens, its importance and utility, but also the problems which one faces and the possible solutions to consider.
Access to oral health care services around the world is limited by a lack of universal coverage. The internet and social media can be an important source for patients to access supplementary oral health related information
Integrating PHRs into EHR Platforms When electronic health re.docxBHANU281672
Integrating PHRs into EHR Platforms
When electronic health records (EHRs) first entered the market, their primary focus was to collect and analyze patient information within health care settings. As technological capabilities grew, so did the interest in making these records available to patients. In addition, many health care professionals saw benefits in allowing the patient to enter his or her own health data into EHR platforms. Though many patients are already utilizing personal health records (PHRs) to manage and track their own health, some believe that an integrated system would provide a better, more comprehensive picture of a patient’s health history.
As a result, many EHR platforms are now equipped with a PHR tool. This PHR tool allows patients to enter health information as they would in a stand-alone PHR system. In addition, web-based portals within the EHR allow patients to access information entered by their physicians and health care providers.
Like many emerging trends and technologies, there is much discussion about the potential benefits and challenges of this type of integrated system. While many health care professionals are excited about the empowerment provided to patients, others express significant concerns about access, security, ethics, and other implications.
In this Discussion, you explore how integrating PHRs into EHR platforms could impact you and your patients.
To prepare:
Review the media
Patient-Centered Technologies
, and reflect upon Dr. Simpson’
s
statements about the ownership of patient data.
Review the article,“Dreams and Nightmares: Practice and Ethical Issues for Patients and Physicians Using Personal Health Records” found in this week’s Learning Resources. Consider how PHR capabilities can be integrated into EHR platforms.
Examine the “dreams” and the “nightmares” the authors associate with this type of integrated health record. Select one benefit or one challenge of integrating PHRs into EHR platforms. Then, consider its potential impact on health care providers and patients. Why is this considered to be a benefit or challenge for health care professionals and patients?
Post by tomorrow 07/05/2016 a minimum of 550 words in APA format and 3 references.
1) A brief description of your selected benefit or challenge and support your selection.
2) Explain the potential impact on health care professionals and patients.
Required Resources
Readings
Saba, V. K., & McCormick, K. A. (2015).
Essentials of nursing informatics
(6th ed.). New York, NY: McGraw-Hill.
Review Chapter 1, “Historical Perspectives of Nursing Informatics”
In this chapter, the authors explain the transition from paper-based records to electronic records. The chapter provides an overview of the historical events that contributed to the rise of electronic health records.
Chapter 25, “Care Delivery Across the Care Continuum: Hospital-Community-Home”
Chapter 25 analyzes the impact of home health on the heal ...
Despite vast improvements in a wide range of technologies, the property buying process has largely remained as it has always been. You still typically have to view the property physically, and then fill in large chunks of paperwork to make the transaction legally valid.
A recent report by Birmingham City University suggests that things may be about to change.
Deloitte Core Beliefs and Culture Surveyadigaskell
The 2013 Deloitte Core Beliefs & Culture Survey is designed to explore the concept
of workplace culture, as defined by a set of timeless core values and beliefs, as a
business driver
The 2012 Roundtable on Institutional Innovation convened leaders to explore how organizations can stay atop today’s constant technological advancement. In the current economic environment, growth and underemployment are two outstanding national, indeed international, problems. While technological advances and globalization are often cited as instigators of the current plight, they are also beacons of hope for the future. Connecting the Edges concludes that by integrating the core of an organization with the edge, where innovation is more likely to happen, we can create dynamic, learning networks.
Generative AI Deep Dive: Advancing from Proof of Concept to ProductionAggregage
Join Maher Hanafi, VP of Engineering at Betterworks, in this new session where he'll share a practical framework to transform Gen AI prototypes into impactful products! He'll delve into the complexities of data collection and management, model selection and optimization, and ensuring security, scalability, and responsible use.
State of ICS and IoT Cyber Threat Landscape Report 2024 previewPrayukth K V
The IoT and OT threat landscape report has been prepared by the Threat Research Team at Sectrio using data from Sectrio, cyber threat intelligence farming facilities spread across over 85 cities around the world. In addition, Sectrio also runs AI-based advanced threat and payload engagement facilities that serve as sinks to attract and engage sophisticated threat actors, and newer malware including new variants and latent threats that are at an earlier stage of development.
The latest edition of the OT/ICS and IoT security Threat Landscape Report 2024 also covers:
State of global ICS asset and network exposure
Sectoral targets and attacks as well as the cost of ransom
Global APT activity, AI usage, actor and tactic profiles, and implications
Rise in volumes of AI-powered cyberattacks
Major cyber events in 2024
Malware and malicious payload trends
Cyberattack types and targets
Vulnerability exploit attempts on CVEs
Attacks on counties – USA
Expansion of bot farms – how, where, and why
In-depth analysis of the cyber threat landscape across North America, South America, Europe, APAC, and the Middle East
Why are attacks on smart factories rising?
Cyber risk predictions
Axis of attacks – Europe
Systemic attacks in the Middle East
Download the full report from here:
https://sectrio.com/resources/ot-threat-landscape-reports/sectrio-releases-ot-ics-and-iot-security-threat-landscape-report-2024/
SAP Sapphire 2024 - ASUG301 building better apps with SAP Fiori.pdfPeter Spielvogel
Building better applications for business users with SAP Fiori.
• What is SAP Fiori and why it matters to you
• How a better user experience drives measurable business benefits
• How to get started with SAP Fiori today
• How SAP Fiori elements accelerates application development
• How SAP Build Code includes SAP Fiori tools and other generative artificial intelligence capabilities
• How SAP Fiori paves the way for using AI in SAP apps
Threats to mobile devices are more prevalent and increasing in scope and complexity. Users of mobile devices desire to take full advantage of the features
available on those devices, but many of the features provide convenience and capability but sacrifice security. This best practices guide outlines steps the users can take to better protect personal devices and information.
PHP Frameworks: I want to break free (IPC Berlin 2024)Ralf Eggert
In this presentation, we examine the challenges and limitations of relying too heavily on PHP frameworks in web development. We discuss the history of PHP and its frameworks to understand how this dependence has evolved. The focus will be on providing concrete tips and strategies to reduce reliance on these frameworks, based on real-world examples and practical considerations. The goal is to equip developers with the skills and knowledge to create more flexible and future-proof web applications. We'll explore the importance of maintaining autonomy in a rapidly changing tech landscape and how to make informed decisions in PHP development.
This talk is aimed at encouraging a more independent approach to using PHP frameworks, moving towards a more flexible and future-proof approach to PHP development.
GraphRAG is All You need? LLM & Knowledge GraphGuy Korland
Guy Korland, CEO and Co-founder of FalkorDB, will review two articles on the integration of language models with knowledge graphs.
1. Unifying Large Language Models and Knowledge Graphs: A Roadmap.
https://arxiv.org/abs/2306.08302
2. Microsoft Research's GraphRAG paper and a review paper on various uses of knowledge graphs:
https://www.microsoft.com/en-us/research/blog/graphrag-unlocking-llm-discovery-on-narrative-private-data/
GraphSummit Singapore | The Future of Agility: Supercharging Digital Transfor...Neo4j
Leonard Jayamohan, Partner & Generative AI Lead, Deloitte
This keynote will reveal how Deloitte leverages Neo4j’s graph power for groundbreaking digital twin solutions, achieving a staggering 100x performance boost. Discover the essential role knowledge graphs play in successful generative AI implementations. Plus, get an exclusive look at an innovative Neo4j + Generative AI solution Deloitte is developing in-house.
Essentials of Automations: The Art of Triggers and Actions in FMESafe Software
In this second installment of our Essentials of Automations webinar series, we’ll explore the landscape of triggers and actions, guiding you through the nuances of authoring and adapting workspaces for seamless automations. Gain an understanding of the full spectrum of triggers and actions available in FME, empowering you to enhance your workspaces for efficient automation.
We’ll kick things off by showcasing the most commonly used event-based triggers, introducing you to various automation workflows like manual triggers, schedules, directory watchers, and more. Plus, see how these elements play out in real scenarios.
Whether you’re tweaking your current setup or building from the ground up, this session will arm you with the tools and insights needed to transform your FME usage into a powerhouse of productivity. Join us to discover effective strategies that simplify complex processes, enhancing your productivity and transforming your data management practices with FME. Let’s turn complexity into clarity and make your workspaces work wonders!
Climate Impact of Software Testing at Nordic Testing DaysKari Kakkonen
My slides at Nordic Testing Days 6.6.2024
Climate impact / sustainability of software testing discussed on the talk. ICT and testing must carry their part of global responsibility to help with the climat warming. We can minimize the carbon footprint but we can also have a carbon handprint, a positive impact on the climate. Quality characteristics can be added with sustainability, and then measured continuously. Test environments can be used less, and in smaller scale and on demand. Test techniques can be used in optimizing or minimizing number of tests. Test automation can be used to speed up testing.
UiPath Test Automation using UiPath Test Suite series, part 4DianaGray10
Welcome to UiPath Test Automation using UiPath Test Suite series part 4. In this session, we will cover Test Manager overview along with SAP heatmap.
The UiPath Test Manager overview with SAP heatmap webinar offers a concise yet comprehensive exploration of the role of a Test Manager within SAP environments, coupled with the utilization of heatmaps for effective testing strategies.
Participants will gain insights into the responsibilities, challenges, and best practices associated with test management in SAP projects. Additionally, the webinar delves into the significance of heatmaps as a visual aid for identifying testing priorities, areas of risk, and resource allocation within SAP landscapes. Through this session, attendees can expect to enhance their understanding of test management principles while learning practical approaches to optimize testing processes in SAP environments using heatmap visualization techniques
What will you get from this session?
1. Insights into SAP testing best practices
2. Heatmap utilization for testing
3. Optimization of testing processes
4. Demo
Topics covered:
Execution from the test manager
Orchestrator execution result
Defect reporting
SAP heatmap example with demo
Speaker:
Deepak Rai, Automation Practice Lead, Boundaryless Group and UiPath MVP
UiPath Test Automation using UiPath Test Suite series, part 5DianaGray10
Welcome to UiPath Test Automation using UiPath Test Suite series part 5. In this session, we will cover CI/CD with devops.
Topics covered:
CI/CD with in UiPath
End-to-end overview of CI/CD pipeline with Azure devops
Speaker:
Lyndsey Byblow, Test Suite Sales Engineer @ UiPath, Inc.
Observability Concepts EVERY Developer Should Know -- DeveloperWeek Europe.pdfPaige Cruz
Monitoring and observability aren’t traditionally found in software curriculums and many of us cobble this knowledge together from whatever vendor or ecosystem we were first introduced to and whatever is a part of your current company’s observability stack.
While the dev and ops silo continues to crumble….many organizations still relegate monitoring & observability as the purview of ops, infra and SRE teams. This is a mistake - achieving a highly observable system requires collaboration up and down the stack.
I, a former op, would like to extend an invitation to all application developers to join the observability party will share these foundational concepts to build on:
Alt. GDG Cloud Southlake #33: Boule & Rebala: Effective AppSec in SDLC using ...James Anderson
Effective Application Security in Software Delivery lifecycle using Deployment Firewall and DBOM
The modern software delivery process (or the CI/CD process) includes many tools, distributed teams, open-source code, and cloud platforms. Constant focus on speed to release software to market, along with the traditional slow and manual security checks has caused gaps in continuous security as an important piece in the software supply chain. Today organizations feel more susceptible to external and internal cyber threats due to the vast attack surface in their applications supply chain and the lack of end-to-end governance and risk management.
The software team must secure its software delivery process to avoid vulnerability and security breaches. This needs to be achieved with existing tool chains and without extensive rework of the delivery processes. This talk will present strategies and techniques for providing visibility into the true risk of the existing vulnerabilities, preventing the introduction of security issues in the software, resolving vulnerabilities in production environments quickly, and capturing the deployment bill of materials (DBOM).
Speakers:
Bob Boule
Robert Boule is a technology enthusiast with PASSION for technology and making things work along with a knack for helping others understand how things work. He comes with around 20 years of solution engineering experience in application security, software continuous delivery, and SaaS platforms. He is known for his dynamic presentations in CI/CD and application security integrated in software delivery lifecycle.
Gopinath Rebala
Gopinath Rebala is the CTO of OpsMx, where he has overall responsibility for the machine learning and data processing architectures for Secure Software Delivery. Gopi also has a strong connection with our customers, leading design and architecture for strategic implementations. Gopi is a frequent speaker and well-known leader in continuous delivery and integrating security into software delivery.
GridMate - End to end testing is a critical piece to ensure quality and avoid...ThomasParaiso2
End to end testing is a critical piece to ensure quality and avoid regressions. In this session, we share our journey building an E2E testing pipeline for GridMate components (LWC and Aura) using Cypress, JSForce, FakerJS…
Pushing the limits of ePRTC: 100ns holdover for 100 daysAdtran
At WSTS 2024, Alon Stern explored the topic of parametric holdover and explained how recent research findings can be implemented in real-world PNT networks to achieve 100 nanoseconds of accuracy for up to 100 days.
Pushing the limits of ePRTC: 100ns holdover for 100 days
Commodification of patient opinion
1. Deborah Lupton
Department of Sociology
and Social Policy,
University of Sydney
The Commodification of Patient Opinion: the Digital
Patient Experience Economy in the Age of Big Data
Sydney Health & Society Group Working Paper No. 3
2. 1
The Commodification of Patient Opinion: the Digital Patient Experience Economy
in the Age of Big Data
Sydney Health & Society Group Working Paper No. 3
Deborah Lupton
Published by the Sydney Health & Society Group, Sydney, Australia, 2013
The SH&SG Working Papers series is coordinated by Deborah Lupton, Department of
Sociology and Social Policy, University of Sydney: deborah.lupton@sydney.edu.au
This working paper may be cited as: Deborah Lupton (2013) The Commodification of
Patient Opinion: the Digital Patient Experience Economy in the Age of Big Data. Sydney
Health & Society Group Working Paper No. 3. Sydney: Sydney Health & Society Group.
3. 2
Abstract
As part of the digital health phenomenon, a plethora of interactive digital platforms
have been established in recent years to elicit lay people’s experiences of illness and
healthcare. The function of these platforms, as expressed on the main pages of their
websites, is to provide the tools and forums whereby patients and caregivers, and in
cases medical practitioners, can share their experiences with others, benefit from the
support and knowledge of other contributors and contribute to large aggregated data
archives as part of developing better medical treatments and services and conducting
medical research. However what may not always be readily apparent to the users of
these platforms are the growing commercial uses by many of the platforms’ owners of
the archives of the data they contribute. This article examines this phenomenon of what
I term ‘the digital patient experience economy’. In so doing I discuss such aspects as
prosumption, the phenomena of big data and metric assemblages, the discourse and
ethic of sharing and the commercialisation of affective labour via such platforms. I argue
that via these online platforms patients’ opinions and experiences may be expressed in
more diverse and accessible forums than ever before, but simultaneously they have
become exploited in novel ways.
Introduction
In recent years there has been a turn within some parts of medicine and healthcare
towards the use of digital media technologies as a means of measuring and monitoring
patients’ health states and their healthcare experiences and encouraging self-care.
Medicine has been moving inexorably towards a focus on the value of data as an
apparently ‘objective’ source of medical knowledge about the human body for some
decades now (Waldby, 2000; Nettleton, 2004; Blaxter, 2009; Mort and Smith, 2009).
This emphasis has progressed towards the embracing of the new digital media
technologies that have been enabled by Web 2.0 as a means of producing and sharing
such data, both by healthcare providers and patients in what has been variously
described as ‘e-health’, ‘Health 2.0’, ‘Medicine 2.0’ or ‘digital health’ initiatives.
I have elsewhere (Lupton, 2013a) employed the term ‘the digitally engaged
patient’ to describe the phenomenon by which lay people have been encouraged to take
an active role in producing and consuming information about health and medicine by
using digital technologies. In the discourse of the digitally engaged patient two ideals
meet. One is the notion of ‘patient engagement’ or ‘patient empowerment’ (often termed
‘patient activation’ in the USA) that has recently emerged in healthcare policy in many
developed societies (Andreassen and Trondsen, 2010; Veitch, 2010; Barello et al., 2012;
Morden et al., 2012). In this discourse, ideal patient/citizens are positioned as taking
active steps in the interests of preserving and promoting their own good health,
including accessing relevant information, self-monitoring their health and taking
4. 3
responsibility for managing their medical conditions. These actions are promoted as
having the potential to relieve the financial burden on the healthcare system in the
current era of austerity (Veitch, 2010; De Vogli, 2011).
The other ideal contributing to the concept of the digitally engaged patient is that
of patients employing appropriate digital media technologies to become more
knowledgeable about their health and illness states and medical treatments and to
provide information to other patients and healthcare providers. Digital media
technologies are now promoted for use in patient self-care and self-monitoring,
conducting medical encounters remotely and collecting data about healthcare use
(Adams, 2011; Swan, 2012a, 2012b; Lupton, 2013a). In some forums lay people are
encouraged to ‘digitise’ themselves: that is, render their bodies into digital form using
the new wearable monitoring technologies to produce data that may be quantified and
transmitted to others for their perusal (Topol, 2010; Lupton, 2012, 2013b; Swan, 2012b,
2012c). In others, they are encouraged to use social media to engage with other patients
by sharing experiences of their conditions and treatments and relating accounts of
healthcare encounters (Orizio et al., 2010; Adams, 2011, 2012; Griffiths et al., 2012;
Mazanderani et al., 2012).
Online patient support networks have existed for some time as a means of
patient support and information sharing. Several sociological research studies in the
late 1990s and into the first decade of the 2000s were devoted to exploring how lay
people used these internet technologies for seeking information and engaging in online
patient support communities (for a recent overview of this research, see Kivits, 2013).
The term ‘e-scaped medicine’ (Nettleton and Burrows, 2003; Nettleton, 2004) was
employed in relation to Web 1.0 technologies to describe the ways in which medical
information and knowledge had apparently moved beyond the boundaries of the clinic
and the medical journal to online sites that were easily accessible to lay people as well
as providing them with the opportunity to contribute to knowledge about medical and
health issues.
In the Web 2.0 era, further technological developments have brought with them
even greater opportunities for lay people to not only seek information across an ever-
growing array of websites and blogs directed at health and medical issues but also to
engage in patient support and activism communities, the evaluation of medical care and
contribute to the aggregation of data about medical procedures and drug therapies for
specific illnesses and diseases. Through social media platforms dedicated to specific
illnesses or conditions such as Facebook pages, Twitter hashtags and YouTube videos of
patient experiences and medical techniques and therapies, as well as the more
traditional format of online discussion sites, information can be exchanged, discussion
facilitated and activism mobilised across the globe in real-time. Not only can people now
blog about their illness and medical experiences, they can make and upload their own
YouTube videos and Instagram images, and update their social media profiles
constantly with comments and data about their health state and treatments. There is
now much talk of patient ‘participation’ , ‘collective knowledge of the masses’ (or in
more recent web-parlance, ‘crowdsourcing’) and ‘collaborative’ relationships between
5. 4
patients or lay people and healthcare professionals and providers in terms of producing
and sharing data on medical and health topics.
Healthcare providers and organisations are also increasingly subjected to
digitalised representations of their services and assessments in this new age of digital
health. They have begun to use social media sites, online forums and their own blogs
and websites to provide information about their services and about preventive health
and medical treatments in general. These sites also often allow people to make
comments about their experiences with healthcare providers and even to formally
evaluate and rank them online. Furthermore, numerous interactive digital platforms
have been established specifically to elicit lay people’s accounts of illness and therapies
(Thielst, 2011; Griffiths et al., 2012; Greaves et al., 2013; Rozenblum and Bates, 2013).
It is upon these latter-mentioned social media platforms that I focus in this
article. I discuss what I term ‘the digital patient experience economy’, in which patients’
online accounts and details of their medical conditions and their ratings and opinions of
healthcare providers and institutions have become valued not only for the support and
information they offer to other patients but also for their increasing commercial value
they have for other actors. These data have become treated as another form of digital
intellectual property, owned not by the patients themselves but by the companies that
encourage patients to upload their experiences that accumulate in the data archives
they own and over which they have control or which profit from the harvesting of these
data and on-selling them to their clients. In the ensuing discussion I draw in particular
on writings within sociology, communication and media studies and cultural studies on
the phenomena of prosumption and big data, and its collection, manipulation and
commercialisation in the context of an increasing metricised everyday life as it enacted
in digital transactions.
The overarching theoretical perspective structuring the present discussion is
that derived from science and technology studies, sometimes referred to as the material
semiotic or the socio-technical approach. This perspective views material objects such
as digital media technologies as active participants that shape human bodies and selves
as part of heterogeneous networks. Human actors (the users of these technologies)
participate in configuring the meaning and uses of the technologies, just as technologies
themselves enact human action, embodiment and meaning (see, for example,
Timmermans and Berg, 2003; Mol and Law, 2004; Nicolini, 2007; Oudshoorn, 2011).
The concept of the ‘assemblage’, also derived from science and technology studies as
well as Deleuze and Guattari’s writings (Marcus, 2006), is employed as a way of
acknowledging both the material and non-material, the human and the non-human, the
fleshly and the ideational in ever-changing configurations. It therefore recognises the
dynamic nature of people’s interactions with technologies in a world in which the digital
is increasingly part of everyday lives, social relationships and concepts of subjectivity
and embodiment.
6. 5
Prosumption, big data and metric assemblages
The new digital health technologies participate in the growing accumulation of what has
been termed ‘big data’ or ‘transactional data’: that is, the vast quantities of data, both
quantitative and qualitative, that are the digital traces or by-products of users’
interactions and transactions with digital media technologies. These digital traces
include the data that are gathered on users’ activities when they visit websites,
including the products they buy, the telephone numbers they call and the government
agencies and commercial entities with which they interact. It also includes ‘user-
generated content’, or data that have been intentionally uploaded to social media
platforms by users as part of their participation in these sites. This phenomenon has
been entitled ‘prosumption’ by some writers; a term used to convey the simultaneous
production and consumption of content (Beer, 2009; Beer and Burrows, 2010; Ritzer
and Jurgenson, 2010; Ritzer et al., 2012).
While prosumption has been a feature of capitalist economies for some time, the
new digital media technologies have provided the conditions for an expansion of these
activities and new ways of commoditising the data that are generated from them (Ritzer
et al., 2012). The data generated both by digital prosumption and by routine
transactions have become important sources of commercial information for the ‘new
media capitalists’ (Gehl, 2011, p. 1230). These data are particularly valued because they
are collected as a by-product of behaviour rather than directly via purposive surveys or
interviews, and also because they can be collected in real time. Users of these new
digital media platforms have subsequently become ‘a valuable source of digital artifact
processing’ for the platforms’ owners (Gehl, 2011, p. 1229). The data they prosume are
used to construct profiles of consumer habits and to market to consumers in ever more
detailed and personalised ways as well as by government agencies to track populations’
behaviours (Beer, 2009; Adkins and Lury, 2011; boyd and Crawford, 2012; Beer and
Burrows, 2013).
Sociologists have begun to direct attention at the ways in which questions of
measure and value have begun to permeate many aspects of social life (Savage and
Burrows, 2007; Adkins and Lury, 2011; Ruppert, 2011; Burrows, 2012). They argue that
population metrics, in particular, are a specific means of constructing certain metric
assemblages of individuals or populations using digital data gathered from a variety of
sources. The metrics derived from digital databases make visible aspects of individuals
and groups that are not otherwise perceptible, because they are able to ‘join-up’ a vast
range of details derived from various sources. Individuals and social groups or
populations are thereby rendered into multiple aggregations that can be manipulated
and changed in various ways depending on what aspects are focused on or searched for.
Behaviours and dispositions are interpreted and evaluated with the use of the
measuring devices, complex algorithms and opportunities for display afforded by these
technologies, allowing for finer detail to be produced on individuals and populations
(Adkins and Lury, 2011; Cheney-Lippold, 2011; Ruppert, 2011, 2012; Burrows, 2012).
These metrics may be used to make assessments about the performance of people,
7. 6
groups and things (for example, government agencies or schools, and in the case of
medicine, healthcare services or therapies) (Ruppert, 2012).
Metrics are both drawn from the actions and interactions of individuals and also
shape them, either by external agencies using the metrics to influence or act upon
individuals or by individuals themselves using the metrics gathered about them to
change their behaviour in response, so that a continual loop is established between data
and behaviour (Ruppert, 2011, 2012). Concepts of citizenship and consumers are now
frequently phrased via the discourses of metricisation, as governments and private
enterprises laud the apparent benefits offered by the accumulation of big data via digital
transactions. It is assumed that as long as efficient systems are put into place that are
able to gather, share and interpret these data, this will lead to greater governmental
efficiency and the flourishing of business enterprises as a result of the production of
better knowledges about citizens/consumers (boyd and Crawford, 2012; Ruppert,
2012).
These discourses are clearly evident in the digital health literature, in which the
digitally engaged patient is configured as ideally developing both self-knowledge and
knowledge of healthcare providers and the healthcare system is represented as
benefiting from accumulating large masses of data about patients, treatment outcomes
and healthcare providers. The digital health phenomenon as it configures the ideal of
the digitally engaged patient seeks to privilege the body that is measured, monitored,
quantified and visualised in ever greater detail through the efforts of the patient as well
as healthcare professionals (Lupton, 2012, 2013b). The lure and potential of big data
have had a major impact upon healthcare policy. There is now much focus on and
discussion concerning the power of large masses of data gathered by digital
technologies both to inform patients about their own bodies and health states and also
to provide information to healthcare providers about the health states of populations
and the use of healthcare (Adams, 2011; Harris, 2012; Swan, 2012b; Ayers et al., 2013;
Greaves et al., 2013; Rozenblum and Bates, 2013). These data include blogs posts and
comments on health-related websites and social media platforms, online medical
records, digital records of healthcare use, patients’ ratings of healthcare workers and
institutions and the data collected by self-tracking mobile or wearable devices or
websites. These data are commonly represented in the medical and healthcare
literature as providing an unprecedented opportunity to improve medical care (Swan,
2012a, 2012b; Topol, 2012), as well as in media reports, suggested in the headline of
one news item: ‘Better medicine, brought to you by big data’ (Harris, 2012).
Here again, prosumption is an integral concept in understanding the ways in
which digital technology users interact with their technologies, particularly in a context
in which they are invited (or mandated) to produce their own personalised data, as in
the project of ‘digitising the self’, or to rate others such as healthcare providers.
Representations of the value of ‘digitising’ oneself and ‘measurement-based medicine’
suggest that data in themselves (whether they are the personalised data individuals
collect by using self-tracking or self-care technologies or the big data accumulated on
the internet from the activities of a mass of individuals) are more powerful and accurate
8. 7
sources of knowledge than are other means of collecting information about people’s
behaviour.
The new patient support online platforms
As part of the digital health phenomenon, a number of online platforms have been
developed that have been designed explicitly to encourage patients and their caregivers
to share their experiences with each other and contribute to a massive database of
information. These platforms include CarePages (CarePages, 2013), PatientsLikeMe
(PatientsLikeMe, 2013), Health Unlocked (Health Unlocked, 2013), CureTogether
(CureTogether, 2013), Smart Patients (Smart Patients, 2013), Treato (Treato, 2013) and
Patient Opinion (Patient Opinion, 2013). Many of these websites have attracted large
numbers of regular users. The developers of Health Unlocked, for example, claim that it
is the most well-used patient support site in the UK, receiving over 700,000 visits a
month, while it is asserted on the CarePages site that it receives over a million visits a
month.
Digital health platforms often emphasise the opportunities they provide for
users not only to self-track details of their disease or condition but also to contribute to
a large mass of aggregated data. Thus, for example, on the PatientsLikeMe website, lay
people are invited to register as members to gain access to others’ uploaded data on
their disease or health condition and to upload their own data by creating their personal
health profile. This then allows users to compare their own experiences with others.
Such physiological markers as severity of symptoms, quality of life, mood, symptom
triggers, responses to new drugs or therapies and side-effects may be tracked on the
website and shared with other users. The website aggregates the data from all users
with the same condition as well as providing personalised graphs and charts that allows
users to identify patterns in their experiences. The focus is on quantifying these
markers as much as possible, in what the website’s co-founder, Jamie Heywood,
describes as ‘measurement-based medicine’ (quoted in Marketwire, 2013).
Recent innovations in online technologies directed at eliciting data voluntarily
from patients have explored ways to connect diverse sources of data for the use of both
patients and healthcare providers. The HealthTap (HealthTap, 2013) website and
related app is explicitly directed at both patients and doctors. It provides information to
patients and connects them with healthcare providers, allowing them to ask questions
about health and medical issues that are answered by doctors, and to search for doctors
in their area and make appointments online. The doctors who participate answer
questions and at the same time are able to build a professional profile and online
reputation and advertise their services. Medical practices, clinics and hospitals and
digital technology developers are also encouraged to participate, providing information
on their services and reaping the benefits of the data that are produced by the
contributions of patients and doctors. Doctors’ answers to patients’ questions are
aggregated so that the patients can see the level of agreement and seek second opinions,
while doctors are ranked according to the quality of their responses. Such platforms,
9. 8
therefore, represent both patients and doctors as the generators and beneficiaries of the
data collected. In this digital data economy there is a mutual exchange of data, each
reliant on the other party to participate in the exchange to produce the value of the data.
Other platforms have been designed specifically to encourage patients to share
data they have collected on their bodies with healthcare providers and researchers. The
Ginger.io platform (Ginger.io, 2013) has been developed as one such tool. Healthcare
providers are encouraged to suggest to patients with diabetes, adult ADHD, heart
disease and inflammatory bowel disease that they install the Ginger.io app on their
digital device (such as a smartphone). The app then automatically collects information
on the patients’ bodily movements and call and texting habits (the websites calls this
information ‘passive data’). Other health-related information is collected when the
patient regularly enters it into the app after receiving a prompt (referred to as ‘active
data’). These data are then provided to healthcare providers and researchers to predict
individual behaviours and identify trends in the aggregate data. Patients are told that
these data will both help themselves and also to medical research that will eventually
result in better care for themselves and others with their condition. The platform’s
motto is ‘Big Data, Better Health’.
The discourses of these sites focus on patient support and the democratic
sharing of information, allowing contributors to benefit from others’ knowledge and
experience of their medical conditions. ‘Build your support circle’ it is claimed on the
CarePages website. The CureTogether website asserts that users ‘will love
CureTogether’ because: ‘You’ll learn from people going through the same thing.’ Patient
support websites often include statements about the importance of sharing as the
integral part of what they are trying to achieve. The developers of PatientsLikeMe, for
example, claim on a page entitled ‘Openness Policy’, that: ‘we believe sharing your
healthcare experiences and outcomes is good. Why? Because when patients share real-
world data, collaboration on a global scale becomes possible. New treatments become
possible. Most importantly, change becomes possible.’ Some sites, such as Patient
Opinion, focus more narrowly on eliciting patients’ experiences of health services (in
this case, UK’s National Health Service) with the aim of directly informing service
providers of the positive and negative experiences that patients have so that services
may be improved: ‘We pass your stories to the right people to make a difference.’
Incorporated into this ethic of sharing and democratisation, and the focus on the
needs and welfare of the patients who contribute their experiences that dominate in
such statements on many patient support websites, is the act of making these data
increasingly available (in aggregated or anonymised form) to medical researchers,
pharmaceutical companies, medical device makers, healthcare policy makers and
healthcare providers. As evidenced by the words quoted above from PatientsLikeMe, it
is argued that such ‘sharing’ is part of the project of ‘making patients’ lives better’. As
part of a general ‘rhetoric of democratisation’ and ‘participatory cultures’ (Beer, 2009;
Beer and Burrows, 2010), it is suggested that lay people become ‘good citizens’ by
participating in these technologies and contributing their experiences so that they may
be aggregated for the greater good (Adams, 2011, 2012). Being a digitally engaged
10. 9
patient, therefore, involves considering the benefits offered by one’s participation to
others as well as to oneself.
The digital patient experience economy
There are various ways in which patients’ experiences of illness and healthcare have
been commodified in recent decades. These include the publication of books or
magazine articles relating a particular individual’s experiences of disease or even the
dying process, interview material from patients to contribute to news media reports or
documentaries and the use of illness narratives for the purposes of eliciting donations
for charities devoted to patient support or medical research. Sociologists and other
researchers have frequently drawn upon narratives of illness and healthcare
experiences to conduct research on these topics (Mazanderani et al., 2013). Patients’
prosumption activities on social and other digital media platforms represent another,
rapidly expanding way in which their illness narratives may be commodified.
It has been contended that the labour of producing blog posts or other media
communicative texts about one’s illness or medical treatments is outside the field of
commercial value and that instead it has personal value as communicative, ethical and
affective labour (Radin, 2006; Adams, 2011; Mazanderani et al., 2012, 2013; McCosker
and Darcy, 2013). As noted above, the ethic of sharing in social media – conveying one’s
thoughts and feelings to others as a means of connection and support, as a type of gift --
is a major dimension of such platforms. This concept of sharing excludes the use of
these data for commercial purposes (John, 2013). However, while in some cases these
data are offered to any user free of charge, increasingly they are provided for a fee,
incorporating a financial as well as a philanthropic motive into the data sharing project
that these sites seek to establish.
Indeed a major difference between the newer patient support websites that have
emerged in the Web 2.0 era and earlier patient support and information sites is that
they have been established not by patient communities themselves or by charities or
other non-profit organisations addressed at supporting specific medical conditions, but
by web entrepreneurs or pharmaceutical companies specifically seeking to use the data
collected for commercial reasons. In the past, pharmaceutical companies have
established or financially supported some patient support websites. This support is not
always readily apparent to visitors to these sites (Ball et al., 2006; Read, 2008). The
newer patient support websites are building on this commercial involvement in other
ways: particularly in the use of the data uploaded by the sites’ users. While the initial
impetus for developing the website may have come from personal experiences of illness
or those of a family member (as is the case of PatientsLikeMe, for example, one of the
largest and best established sites), many of the more recent sites have been established
with a predominantly commercial motive. These motives include selling advertising,
goods and services to users and on-selling data from their archives to third parties.
The arena of clinical trials for new drugs is one form of medical knowledge
generation where crowdsourcing via patient-focused social media platforms has been
11. 10
employed for some years as an alternative to the expensive traditional format of the
standard clinical trial. This approach has drawn on the self-interest and voluntary
labour of patients and their willingness to self-experiment rather than to be co-opted
into the traditional randomised controlled trial to contribute to the innovation process
(Cooper, 2012). The recruitment of patients for clinical trials via patient support sites
has now become more formalised. PatientsLikeMe, for example, has developed tools for
matching registered users with global clinical trials of new therapies and drugs, while
Smart Patients provides direct information and information feeds about clinical trials to
users.
Other websites promoting patient engagement and support using social
networking are funded by companies that then use the websites to sell advertising and
the data collected to interested parties, such as health product marketers. This is the
strategy developed by Alliance Health Networks (Alliance Health Networks, 2013), for
example. They have established more than 50 condition-specific social networks on
websites with related apps (including such condition as diabetes, obesity, Alzheimer’s
disease, arthritis, ADD and epilepsy) that allow patients to share their experiences with
others, ask questions of experts, access news articles on their condition, post product
reviews and so on. The owners are quite open in their website about their use of these
social networks to provide information to health marketers, noting that: ‘Each platform
includes myriad ways for marketers to engage with consumers – from banner ads and
offer programs to microsites, targeted email campaigns and sponsored educational
newsletters.’ This information is, however, found on a page directed at potential
commercial clients rather than at the patients who use the site. On the patient
community sites, for example Diabetic Connect (Diabetic Connect, 2013), it is noted on
the ‘About’ page that the site ‘is owned and operated by Alliance Health. Our mission is
to create social health networks that connect people to support communities for a
growing number of health conditions.’ No mention is made here about the commercial
mission of Alliance Health: this is only made clear if the user takes the trouble to click
through to the Alliance Health website itself or to read through the Privacy Policy page.
As this example suggests, it often not until people access the fine print in sections
of the sites such as their terms and conditions of use and their privacy policy that the
ways in which the sites’ owners employ users’ data in various ways for commercial
purposes is made apparent. While some sites include a direct statement concerning
‘how we make money’, this is not always made entirely clear. For example, it is noted on
some websites that the data aggregated on the site by users’ contributions are used ‘to
conduct scientific studies’ or ‘research’, with no direct mention made of the fees that the
developers may receive for providing these data to their clients. On some sites it is not
until an individual begins the ‘sign up’ process to become a contributing ‘member’ that
the terms and conditions and privacy policies are revealed. Some platforms represent
themselves as a ‘free service’ for those who contribute data that also offers ‘paid
services’ for those who use it (for example, Health Tap). The PatientsLikeMe ‘About Us’
page describes their model as ‘for-profit’ but ‘not one with a “just for profit” mission’,
12. 11
suggesting their dual purpose: to seek both to help patients and also to use the data
members provide for the developers’ own financial gain as part of a business enterprise.
In a further development, some platforms have been developed specifically to
harvest or ‘scrape’ the web for patients’ accounts of their experiences in blogs and
forums. Treato (Treato, 2013) is one such example. It focuses on harvesting patients’
accounts of drug therapies across the spectrum of social media and other digital
platforms, including seeking out accounts of how well drugs work, their side-effects and
why patients may switch one brand for another. It uses a form of semantic analysis
called ‘Natural Language Processing’ to convert the written accounts of patients into
quantified data. Treato provides free access to the general data that are collected but
also offers a more targeted service to pharmaceutical companies that incurs fees. This
company is merely one of many engaged in data brokering and web scraping for
commercial reasons in what is a rapidly expanding industry (Gehl, 2011).
Given the increasing commercial value of the data uploaded to patient opinion
platforms, it is not surprising that the representation of patient experience as
intellectual property is rendered explicit in the terms and conditions of some of the
newest websites. For example, the developers of the recently-established Smart
Patients website note in the site’s Frequently Asked Questions page under the question
‘How do you make money?’ that: ‘We compile anonymous data from the website and
conduct voluntary surveys and projects among our members to answer questions of
biopharma companies, scientists, researchers, and educators.’ In this platform’s Terms
of Agreement section it is made clear that what the developers term ‘user content’ is
their intellectual property. As part of protecting this property, users are informed that
they are not permitted to data-mine or scrape the site systematically, and they must
agree to these terms before signing up as members.
Discussion and conclusion
I have argued in this article that a new form of patient assemblage, the digitally engaged
patient, and a new form of data assemblage, the patient experience as it is rendered into
digital data formats, are configured via the most recent digital media technologies as
they have been employed in relation to health and healthcare. In the context of the
currently dominant ideal of the digitally engaged patient in healthcare policy, the role of
gathering data on oneself and employing these data both for self-interested purposes
and for the benefit of others is privileged. The accumulation of big data that is afforded
by the new digital media technologies is positioned as an innovative way forward for
healthcare, supposedly providing better, more informed and more economically
efficient medical treatment.
Prosumption as it takes place on such websites involves a flow of data between
the prosumers themselves (patients, caregivers and sometimes medical practitioners)
and also to other interested parties who may or may not pay for these data and who
then use the data to market or evaluate their goods or services to the patient, caregiver
or medical practitioner. Just as other forms of digital prosumption have been
13. 12
expropriated by capitalist enterprises in the interests of profit (Gehl, 2011; Rey, 2012),
so too patient experience prosumption has generated new avenues for commercial
endeavours by enterprises that have seen the opportunity for expropriating its value. In
the new data economies of digital data production and harvesting, the digital patient
experience economy hinges on the commercialisation of written accounts or rankings
by lay people of their medical conditions, their treatments and their interactions with
healthcare providers. Lay people’s experiences and opinions as they are expressed in
digital media forums, with all the suffering, hope, despair, frustration, anger and joy that
are often integral aspects of coping or living with a medical condition or surgical
procedures, have become commercial properties for market exchange. They are not
offered and nor do they receive financial compensation for providing their experiences.
The value they derive is non-commercial, while the exchange value of the data they
prosume is accumulated by the companies that provide the platforms for patients to
share their experiences or trawl the web to harvest the data and render it into a form
that is valuable for commercial entities.
Given that the information about the commercial uses to which data archives are
put is often buried on these platforms and must be actively searched for, or else is
couched in ambiguous terms, it is likely that many of the patients who engage in social
media networks and patient experience and opinion platforms for personal or altruistic
reasons are not fully aware of the extent to which their accounts have become valuable
commodities. Patients do potentially benefit from their prosumption activities on
patient support or opinion websites and other digital platforms in which they can
recount their experiences, such as blogs and social media sites such as Facebook and
Twitter. They may derive use value, if not exchange value (Rey, 2012), from the
immaterial products (data) they produce and consume. Research suggests that many
patients appreciate the greater access to information about their conditions and the
emotional support, opportunity to express themselves, feeling part of a community and
greater sense of control over their illness that they may gain from their participation in
such forums (Lamberg, 2003; Radin, 2006; Im et al., 2007; Bender et al., 2011; Isupova,
2011; Wicks et al., 2012; Mazanderani et al., 2013; McCosker and Darcy, 2013; Yli-Uotila
et al., 2013).
Lay people may also engage in resistance to dominant medical forms of
knowledge and power via websites such as pro-anorexia community sites (Fox et al.,
2005) or fat activism online communities (Saguy and Riley, 2005). They may further
gain satisfaction from contributing to scientific research, the production of better
understanding of their condition or the provision of facilities that may benefit
themselves or others with their condition (Radin, 2006; Adams, 2011; Mazanderani et
al., 2013). Data from the PatientsLikeMe website, in particular, have been used for
several academic research studies that have provided insights into the efficacy or side-
effects of medical treatments for chronic diseases such as multiple sclerosis and
Parkinson’s disease (Swan, 2012a).
What is lost in the utopian claims of the big data enterprise is the awareness that
data -- digital or otherwise, big or small -- are not neutral fonts of information. They are
14. 13
political, messy, incomplete, and are not only reflective but also constitutive of subjects,
identities and communities (Beer, 2009; Cheney-Lippold, 2011; Ruppert, 2011; boyd
and Crawford, 2012). As Ruppert (2011, p. 225) puts it; ‘Data are not simply “collected”,
but are the result of multiple sociotechnical arrangements of technological and human
actors that configure agency and action.’ It should also be acknowledged that not only
are digital data themselves social products, but so too are the web hyperlinks, search
engines and engineering of the infrastructure of the internet itself that structure and
delimit the ways in which people are able to search for and find relevant information or
indeed upload and manipulate their own data (Seale, 2005; Mager, 2009; Adams, 2011;
Halford et al., 2013). Those groups and organisations that have access to greater
resources are able to pay for technical expertise and for their websites to achieve
greater visibility. As a consequence, in relation to health or medical-related information,
dominant medical views tend to receive prominence over alternative perspectives
offered from outside medicine, including those of patient activists and support groups
(Seale, 2005; Oudshoorn and Somers, 2006; Mager, 2009). Patients themselves are
rarely encouraged to participate in the design of websites (Oudshoorn and Somers,
2006). When lay people are uploading their experiences to patient support or
healthcare rating and evaluation websites, they must conform to the organisational
demands of these platforms, which typically do not offer full scope for criticism of
healthcare providers. Therefore the sites themselves monitor and discipline patients
who are giving their opinion as part of official forms of monitoring healthcare quality
and patient satisfaction (Adams, 2011, 2012).
Nor do users have control over the products of the emotional and altruistic
labour that they invest in sharing their experiences on online sites. The use value of the
information commodities lay people prosume is restricted by the limits imposed by the
platform they are using. Indeed it can be extremely difficult for people to retrieve for
their own purposes the data they upload to patient experience platforms, enter as part
of their electronic medical records or that are generated as part of their participation in
clinical trials. Lay people’s efforts to collate their own small data aggregates may be
frustrated in the face of the interests of commercialised big data: hence the recent
development of the Small Data website (Small Data, 2013), designed to assist them to
gain access to their data (Heussner, 2013).
As this suggests, while medical knowledge and authority may have ‘e-scaped’ to
some extent from the clinic, even in this age of Web 2.0, big data and dominant rhetorics
of citizen participation in knowledge generation via their prosumption activities on the
internet, there remain limits to the contribution that lay people are able to make to
medical knowledge, the authority they are able to develop and the benefits they are able
to accrue. The digitally engaged patient as an ideal-type is configured through dominant
and often continuing hierarchies of power and knowledge operating as part of the new
digital media economies. Patients’ opinions and illness narratives may be expressed in
more diverse and accessible forums than ever before, but simultaneously they have
become exploited in novel ways in the era of digital health.
15. 14
Little sociological research (or indeed any other type of research) has been
conducted on the uses to which lay people are putting the newer forms of patient
support and opinion websites discussed in this article. We know little about to what
extent the people who contribute to these sites are aware of how their data are used by
third parties, commercially or otherwise; how they feel about this use if they are aware
of it; how they experience the sites as users; and to what extent they may wish to gain
access to their own data for their own purposes. This is a clear and important avenue
for future research.
16. 15
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