Privacy, data protection and health technological innovation Flashcards
Describe the concept of Privacy?
Anita Allen Informational Decisional (Abortion) Physical (Blood samples) properotary Is privacy an objective norm? CCTV problem Barometer - you fit in society
Traditional view - privacy is the legal focus, but is a subjective - personal setting dependent upon relationships and circumstances
Thinking about this objective standard setting, it is better to use the public interest and say “yes, I know that you feel that this is the limit of your privacy, but for these reasons, we need to encroach upon it.”
What is Public Interest (from a legal perspective)
Kantian public interest?
Something that matters for the whole public Welfare of the general public Social security Tyranny of the mass; utilitarianism Veil of ignorance, deontology Categorical imperative, kant
Utilitarian Maximise utility Rwlsian Veil of ignorance Reasonable demand Kantian Categorical imperative/ don’t instrumentalise others The ethics of making a right claim Primary Secondary
Kantian public interest
Refine the consequences equations: one to one not one to mass
Does my appeal to my privacy instrumentalise the person who is most affected by my not surrendering my privacy?
If this is your moral duty, in the public interest this can be required of you by the law
Data protection is NOT the problem
The Privacy paradigm is A problem
What is General Data Protection Regulation (2016/679)
How it is used
History
For whom is it binding? (Article 288 TFEU)
What is it?
Legal framework
Guidelines for personal information
Protecting natural persons
History:
Replaces directive
Guarantee free movement -> directive needed, harmonization
Directive: binding, only in its outcomes (too much free space on how to act => regulation needed)
Regulation: binding in its entirety
How is it used?
It is directly binding all MS, but where it provides for specifications or restrictions of its rules by MS law, MS can incorporate elements of the Regulation into their national law
It concerns the processing of “personal data” that “relate” to “data subjects” who are “identified or identifiable,” “directly or indirectly” from those data, by “data controllers” who determine “the purposes and means of the processing,” where “processing” concerns any action from the collection to the final destruction of the data or rendering it anonymous
A natural Person is a human being and is a real and living person. Legal Person is being, real or imaginary whom the law regards as capable of rights and duties
Regulation is quite vague → a lot of breaches, authorities can not follow up
Automated process
Manual process
For whom is it binding? (Article 288 TFEU)
For all EU member states
Controller and processor (Article 4, definitions)
Controller- Maastricht University
Processor- Persons who collect data for Maastricht University
Data Subject- Person who participates
Controller and Processor can be the same
Binding in situation where personal data is collected
main articles in the basic structure of GDPR (1,4,5,6,9,13,15,16,17,35)
Articles+Appendix = binding Article 1: subject-matter and objectives Article 4: definitions Pseudonymization: “encrypting” Data concerning health: data related to the physical or mental health of a natural person
Article 5: Principles relating to processing of personal data
Fairly, lawfully and transparent
Purpose has to be justifiable
Data minimisation→ only necessary data should be collected for it purpose
Data has to be up to date
Data shall not be stored longer than necessary
What is the difference between privacy and confidentiality?
What role does privacy play in medicine?
Article 6: Lawfulness of processing
Consent (informed)
Article 9: Processing of special categories of personal data
Processing Data revealing ethnic origin etc. prohibited
→ does not apply if subject has given explicit consent
Article 13: Information to be provided where personal data are collected from the data subject
Apply Article 6 and 9 together when processing sensitive data
Purpose needs to be given
Article 15:
Subject has the right to access their data
Article 16:
If there is something wrong with the data, controller shall remove or correct the data
Article 17:
Right to be forgotten
Article 35:
systematic description of the envisaged processing operations and the
purposes of the processing, including, where applicable, the legitimate interest
pursued by the controller;
an assessment of the necessity and proportionality of the processing operations
in relation to the purposes;
an assessment of the risks to the rights and freedoms of data subjects referred to
in paragraph 1; and
the measures envisaged to address the risks, including safeguards, security
measures and mechanisms to ensure the protection of personal data and to demonstrate compliance with this Regulation taking into account the rights and legitimate interests of data subjects and other persons concerned.
Advice: Purpose limitation in Article 5b Exceptions in Article 6 Is this really a question of “Public Interest”? → people might benefit from it Profiling Article 5 (1) b Original consent was broad Third party If effort to reach out is unproportionate no need to reach out to data subjects again What are the consequences? Are the safeguards appropriate? Data subjects might be identifiable once dataset becomes bigger Risk assessment
Define:
Adoption
Diffusion
Diffusion: social process occurs among people in response to learning about an innovation such as new evidence-based approach for extending or improving healthcare
circumstances under which certain factors outweigh others (Barlow)
Adoption: process of making a decision to do or acquire something (Barlow)
Adoption: First use, either by choice or imposition (Ward)
Diffusion: process of sharing between individuals or organizations (Ward)
Dearing & Cox: diffusion “involves an innovation that is communicated through certain channels over time among the members of a social system”
Rate of diffusion depends on opinion of different members of society
What we think about it will determine if innovation will stick
- Strong evidence is not necessarily correlated with rational adoption: “ practice” can prevail over “evidence”
Many new methods or technologies find their way into practice without formal evaluation
Adoption takes place within networks and communities of practice
Adoption and Diffusion in HEALTHCARE?
Attributes less clear
Innovation can be multifaceted
Diffusion is dependent on individuals => healthcare workers, policy makers, etc.
The impact of the innovation may be felt more widely than just in the adopting organisation. Multiple stakeholders from across primary, sec-ondary and social care may be affected
Multiple stakeholders included => everybody has different beliefs, values, personal characteristics
Barriers/Facilitators to adoption and acceptance of innovation
Barriers:
Empowering patients
Lack of patient involvement in development
time between new knowledge being discovered until half the population of physicians acts on it is around 15–17 years → translation gap → need to recreate and make use of knowledge associated with technological and other innovations (also acceptance)
translating ideas from basic and clinical research into the development of new products and approaches
Concern of jobloss
Health literacy => knowledge of other people
Overlapping layers of innovation (The uninterrupted introduction of new practices, policies, and products within a health care system can create a paleontological stratification of practices. Layering innovations on top of multiple surviving practices can increase costs, reduce productivity, and undermine quality and outcomes.)
High Costs of healthcare
Experience
Lack of willingness of sharing data , also between stakeholders
Long-term planning -> change of healthcare insurance, investments
Facilitator:
Homophilous -> within system if individuals are similar, they want/accept same innovation
Country -> cultural innovation, credible government, higher SES
Considering relationships between different activities → links between assessment of clinical need, promotion of research and dissemination of its findings
What is lack of consensus and what effect does it have on innovation in healthcare?
Consensus: different stakeholders agreeing/not agreeing
Stakeholders do not agree on a goal and each have their own motivations and agendas in mind.
→ leads to slower progress in innovation
Conflicting interests ->
Pharmaceutical companies: escalating costs with uncertain returns, reduction in drug sales
Hospitals and health workers: who pays for what, loss of autonomy
Patients and the public: privacy threats regarding personal data
Insurers: balancing expensive treatment vs costs to society, private vs mandatory insurance
Shared interests -> efficiency => reduced costs
- > patient satisfaction
- > job protection
- > reducing costs
How to ensure that a health technology innovation is acceptable for individuals
and can be successfully adopted by the department?
Complex issues, includes lots of parties/ stakeholders
Perceived usefulness => beliefs are often more important
Barlow: process of adoption
Initial acceptance
Adaptation in context
Institutionalized within organizations
Evaluation
Initiation
Implementation
Routinisation
Different factors influencing adoption:
- The nature of the innovation itself (i.e. its attributes, components, complexity)
- It’s ‘inner context’ (i.e., the individuals + their organizational environment directly responsible for adopting the innovation
- The ‘outer context’ of the innovation, i.e. the wider environment into which it is being deployed
- The linkages between all of these
è None of these exist in isolation
Timing of introduction of innovation systems which meet organisational goals but where the main benefits do not accrue directly to the system user are more likely to meet resistance Cost-effectiveness / cost-benefit Availability Understanding, complexity, ease-of-use Trialability Trust in organization Evidence, transparency Social influence, cultural norms and beliefs
What factors drive and shape the adoption and diffusion of technological innovations
in general and healthcare in particular?
Technology acceptance Model (TAM) focuses on factors and decision processes an individual will go through in any decision to accept and use a technology
o Key determinants: perceived usefulness and ease-of-use
Criticism:
Model does not focus on social and cultural aspects of innovation => need to be considered
Adoption also depends on outside factors/ not only individual
Characteristics of adopter
Political context
Pro’s and Con’s =>
Diffusion or the lack thereof is often well explained by three general sets of variables:
each innovation’s set of pros and cons, or attributes
the characteristics of adopters, especially potential adopters’ perceptions of opinion leaders’ reactions, or social influence and the larger social
and political context, including the salience of issues related to the innovation, how proponents and opponents frame the meaning of the innovation, and the timing of its introduction.
The following pros and cons are well codified
cost, or the perceived monetary, time, or other resource expense of adopting and implementing an innovation
effectiveness, or the extent to which the innovation is perceived to work better than what it would displace
simplicity, or how easy the innovation is to understand and use; compatibility, or how well the innovation fits with established ways of accomplishing the same goal
observability, or the extent to which outcomes can be seen
and trialability, or the extent to which the adoption decision is reversible or can be managed in stages.
- > consider patient/ end-user
- > look for investors -> also consider production and marketing, not just research and development
- > need of demand
- > social media as tool for diffusion of healthcare innovations
- > consider target audience
Innovation Theorists
Gabriel Tarde (1903)
S-shaped curve for diffusion processes
Ryan and Gross (1943): adapter categories
Innovators
Early adopters
early/late majorities
Laggards
Katz (1957)
Media → opinion leaders → opinion followers
Hagrerstrand (1965)
Proximity as a determinant for diffusion of use of hybrid corn by farmers
Bass (1969)
Differential equations borrowed from physics applied to model the diffusion of innovation
Mahajan & Peterson (1985)
Extension and simplification of Bass model
2 aramers, internal & external influence
Rogers (1995) Diffusion of Innovation Theory
Greenhalg et al (2004) Diffusion of Innovations in Health Service Organization
Rogers and his Diffusion of Innovation Theory
Used in communication, agriculture, ph, criminal justice, social work and marketing
Used to accelerate the adoption of important public health programs that typically ai to change the behaviour of a social system
Understanding the target population and the factors influencing the rate of adoption
The process by which an innovation is communicated through certain channels over time among the members of a social system
Each adopters willingness and ability to adopt and share an innovation would depend on their awareness, interest, evaluation, trial, and adoption
o Five stage model:
Knowledge => learning about existence and function
Persuasion => becoming convinced of value
Decision => committing to adoption
Implementation => putting it to use
Confirmation => ultimate acceptance (or rejection)
o Three types of innovation decisions
Optional => decision left up to individuals
Collective => collective decisions arrived at by consensus amongst members of a system
Authority => decision made by relatively small number of individuals who possess power, high social status or technological expertise, all employees must comply
=> e.g. policy innovation
Five stage model
Knowledge => learning about existence and function
Persuasion => becoming convinced of value
Decision => committing to adoption
Implementation => putting it to use
Confirmation => ultimate acceptance (or rejection)
Three types of innovation decisions
Optional => decision left up to individuals
Collective => collective decisions arrived at by consensus amongst members of a system
Authority => decision made by relatively small number of individuals who possess power, high social status or technological expertise, all employees must comply
=> e.g. policy innovation
What affects the diffusion of innovation
Elements in the diffusion of innovations An innovation an idea, practice, object that is perceived as new by an individual or other unit of adoption Communication through certain channels over time Among the members of a social system Factors affecting diffusion Innovation characteristics Individual characteristics Social network characteristics External factors
