Glossary
Applied Behavioral Analysis (ABA)
Applied behavioral analysis (ABA) is a behavioral science devoted to the experimental study of socially significant behavior as a function of environmental variables. Throughout the last four decades a number of procedures aimed at enhancing, reducing and maintaining significant human behaviors have been developed by applied behavior analysts. The study of ABA has a long history in the field of autism, and the popularity of behaviorally based interventions has markedly expanded.
Although there are several models of ABA intervention in autism and developmental disabilities, all programs should share a common set of core features: (1) treatment may begin as early as 3 to 4 years of age, (2) intervention is intensive (20-40 weekly hours) and in addition, incidental teaching and practice goals may be operating during most waking hours, (3) intervention is individualized and comprehensive targeting a wide range of skills, (4) multiple behavior analytic procedures are used to develop adaptive repertoires, (5) treatment is delivered in one-to-one format with gradual transition to group activities and natural contexts, (6) treatment goals are guided by normal developmental sequences, and (7) parents are, to different extents, trained and become active co-therapists.
Autism Spectrum Disorder (ASD)
Autism spectrum disorder (ASD) is a biologically based neurodevelopmental disorder characterized by persistent deficits in social communication and social interaction and restricted, repetitive patterns of behaviour, interests and activities. It encompasses disorders previously known as autistic disorder (classic autism, sometimes called early infantile autism, childhood autism, or Kanner’s autism), childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified, and Asperger disorder. It is a chronic condition that requires a comprehensive treatment approach.
Background theory
Interpretive frames are the sets of concepts and theories that stakeholders use (often implicitly) to make sense of concrete situations. They determine the possible meanings that stakeholders can attribute to concrete situations, how they judge the situation (desirable or not) and what questions and concerns it raises for them. They consist of the following (mutually related) elements: judgments of solutions, problem definitions, background theories and normative preferences. A background theory consists of concepts and ideas that a person (implicitly) uses to describe and understand the world, and interpret (scientific) information. In relation to healthcare technologies it shapes what is considered as plausible: what are potential consequences of using this technology? What are its working mechanisms? How does this relate to the underlying, and major, contributory causes of a health problem?
Constructive technology assessment (cTA)
CTA stands for constructive technology assessment. Constructive technology assessment describes a particular form of technology assessment where challenges and uses of new technologies and innovations are anticipated and the results of the analysis are fed back into the ongoing development, implementation and societal embedding of an innovation. The overall ambition is to broaden technology development and implementation by including a broad range of aspects and actors. CTA plays an important role early in the development process. See also: https://cta-toolbox.nl/.
Constructive technology assessment deviates from traditional technology assessment, which limits itself to charting the effects of given technological options and does not attempt directly to influence the development process.
Cost-effectiveness analysis (CEA)
An economic evaluation consisting of comparing various options, in which costs are measured in monetary units, then aggregated, and outcomes are expressed in natural (non-monetary) units. Cost-effectiveness analyses are often used in the field of HTA, and the CEA is typically expressed in terms of a ratio where the denominator is a gain in health and the numerator is the cost associated with the health gain. The health gain is often measured in terms of quality-adjusted life years (QALYs).
ELSI
The acronym ELSI refers to Ethical, Legal and Social Implications (alternatively, the acronym ELSA is also used: Ethical, Legal, and Social Aspects) of emerging sciences, and was conceived as part of the Human Genome Project (an international research project with the goal of determining the base pairs that make up human DNA) to raise awareness of, and study, its ethical and social implications. In HTA, there have been multiple calls for explicit integration of ethical, legal and social issues in assessment of technology.
Error of the third kind
The ‘error of the third kind’ is the error committed by giving the right answer to the wrong problem. Originating in the field of statistical hypothesis testing, there are various types of errors that one can make:
- Type I error (‘false positive’): an effect is detected, for example that bariatric surgery results in remission of diabetes, that is actually not present.
- Type II error (‘false negative’): an effect fails to be detected, for example that bariatric surgery lowers the BMI of patients, that is actually present.
Whereas type I and type II errors refer to inaccuracies in the answers that you provide to a question, type III errors refer to the risk of producing accurate answers to questions that are only partially relevant or considered irrelevant when making up our mind about taking certain decisions. For example: the effect of an intervention, bariatric surgery lowers the BMI of patients, is correctly detected but it is unclear whether a high BMI is the problem that we would like to solve, or whether questions on the efficacy of bariatric surgery define the policy problem (disagreements and concerns may actually consider the desirability of a surgical intervention for health problems like obesity and diabetes).
Health Technology Assessment
Multiple definitions of Health Technology Assessment have been reported in the literature. Using wide consultation of stakeholders, an international joint task group co-led and convened by the International Network of Agencies for Health Technology Assessment (INAHTA) and Health Technology Assessment International (HTAi ; the global, non-profit, scientific and professional society for all those who produce, use or encounter HTA) have proposed the following definition: “A multidisciplinary process that uses explicit methods to determine the value of a health technology at different points in its lifecycle. The purpose is to inform decision-making in order to promote an equitable, efficient, and high-quality health system”.
Note 1: A health technology is an intervention developed to prevent, diagnose or treat medical conditions; promote health; provide rehabilitation; or organize healthcare delivery. The intervention can be a test, device, medicine, vaccine, procedure, program or system.
Note 2: The process is formal, systematic and transparent, and uses state-of-the-art methods to consider the best available evidence.
Note 3: The dimensions of value for a health technology may be assessed by examining the intended and unintended consequences of using a health technology compared to existing alternatives. These often include clinical effectiveness, safety, costs and economic implications, ethical, social, cultural and legal issues, organisational and environmental aspects, as well as wider implications for the patient, relatives, caregivers, and the population. The overall value may vary depending on the perspective taken, the stakeholders involved, and the decision context.
Note 4: HTA can be applied at different points in the lifecycle of a health technology, i.e., pre-market, during market approval, post-market, through to disinvestment of a health technology.
Source: O’Rourke B, Oortwijn W, Schuller T, the International Joint Task Group (2020). The new definition of health technology assessment: A milestone in international collaboration. International Journal of Technology Assessment in Health Care 1-4. https://doi.org/10.1017/S0266462320000215
Ill-structured problem
In policy sciences there is an extensive body of literature on how to understand and deal with different types of policy problems. An important typology of policy problems divides them between well-structured, moderately structured and ill-structured problems. Ill-structured problems are problems where there is substantial disagreement on a number of relevant factual issues (e.g., what is the magnitude and severity of a problem, what are its major causes, what sorts of measures are likely to help alleviate the problem) and on normative aspects (e.g., what is it that restorative or ameliorative measures, whatever they may be, should help to achieve).
The question whether ABA is an appropriate treatment for children with autism may be considered an ill-structured policy problem. Despite extensive research efforts, many issues have remained unresolved or controversial, leaving autism as one of the most puzzling conditions. In addition, there is also an ongoing debate on the question whether autism is a condition in need of a cure. In other words, there is a debate about the plausibility and the desirability of certain outcomes.
Interactive technology assessment (iTA)
iTA stands for interactive technology assessment. Interactive technology assessment describes a particular form of technology assessment in which stakeholders are involved in the process. The aim is to influence the decision process through interactions between supplies, users and parties affected. By involving these different stakeholders, different perspectives and experiences are exchanged and included in the assessment.
Interpretive frames
Interpretive frames are the sets of concepts and theories that stakeholders use (often implicitly) to make sense of concrete situations. They determine the possible meanings that stakeholders can attribute to concrete situations, how they judge the situation (desirable or not) and what questions and concerns it raises for them. They consist of the following (mutually related) elements:
- Judgments of specific solutions: ideas on what is likely to work, which measures could be helpful in overcoming certain problems, which measures would probably not be helpful (and why not); e.g. is ABA an appropriate sort of treatment for children with autism?
- Problem definitions: ideas on what is particularly problematic, key problems experienced encountered by patients, their families, healthcare providers or healthcare managers; e.g. what are the problems that persons with autism run into?
- Background theories: ideas on what is possible / impossible, main causes or mechanisms underlying the current situation; e.g. what sort of long term impact can be expected from training people to behave differently from how they are?
- Normative preferences: ideas on what is desirable, which situation should be pursued, what values should be observed; e.g. is it desirable to try to normalize people?
Judgment of solutions
Interpretive frames are the sets of concepts and theories that stakeholders use (often implicitly) to make sense of concrete situations. They determine the possible meanings that stakeholders can attribute to concrete situations, how they judge the situation (desirable or not) and what questions and concerns it raises for them. They consist of the following (mutually related) elements: judgments of solutions, problem definitions, background theories and normative preferences. A judgment of solution is a statement on the appropriateness of a specific (proposed) solution. In the context of healthcare technologies, it are ideas on whether a technology is seen as a effective, appropriate and feasible solution to a specific healthcare problem.
Moderately structured problem
In policy sciences there is an extensive body of literature on how to understand and deal with different types of policy problems. An important typology of policy problems divides them between well-structured, moderately structured and ill-structured problems. Moderately structured problems are problems where there is substantial disagreement on a number of relevant factual issues (e.g., what is the magnitude and severity of a problem, what are its major causes, what sorts of measures are likely to help alleviate the problem) or on normative aspects (e.g., what is it that restorative or ameliorative measures, whatever they may be, should help to achieve).
A problem may be moderately structured in two different ways. Firstly, ‘moderately structured’ may mean that important knowledge and insights are lacking or contested. Normatively, however, there appears to be a fair amount of consensus: something needs to be done, but it is not entirely clear or agreed upon what. The current situation is deemed to be far from optimal, and there is a fairly clear view of what the situation should be, but there is disagreement about the question how to get there. The second kind of moderately structured problems concern those where the need for change or the desirability of proposed interventions are challenged: we know how to get there, but is that where we want to go?
Normative preferences
Interpretive frames are the sets of concepts and theories that stakeholders use (often implicitly) to make sense of concrete situations. They determine the possible meanings that stakeholders can attribute to concrete situations, how they judge the situation (desirable or not) and what questions and concerns it raises for them. They consist of the following (mutually related) elements: judgments of solutions, problem definitions, background theories and normative preferences. Normative preferences consist of concepts and ideas that a person (implicitly) uses to determine what sort changes in the world are desirable, or which situations we should aim to achieve.
Problem definition
Interpretive frames are the sets of concepts and theories that stakeholders use (often implicitly) to make sense of concrete situations. They determine the possible meanings that stakeholders can attribute to concrete situations, how they judge the situation (desirable or not) and what questions and concerns it raises for them. They consist of the following (mutually related) elements: judgments of solutions, problem definitions, background theories and normative preferences. A problem definition is a description of what a person regards to be the key problem of a current situation.
Scoping
Scoping is a process to identify key issues of concern at an early stage in a technology assessment. It may be conceived as a thorough analysis of a problem and its underlying assumptions, jointly referred to as the ‘problem definition’. This is generally considered the first research step in policy analysis. Decisions taken at this stage regarding the required information, variables, interrelations, criteria, values that underlie the problem, and models that can be used to forecast and evaluate possible solutions determine the choice of alternatives (to be assessed) and drive ultimate policy options.
The exercise of scoping, in the context of HTA, can be conducted to specify the questions that need to be addressed in the assessment. It is the process of defining the content of a report and formulating the key questions to be answered: e.g., what is the policy problem? Why does this technology need an assessment? What is the target audience? Who are the key experts and stakeholders that should be involved in the assessment process? What are relevant outcome measures?
Stakeholders
In the context of HTA, the term stakeholder refers to any interested party affected by a decision on the development, introduction, use and funding of a health technology. More specifically, it refers to individuals, organizations or communities that are likely to experience the consequences, and / or have a direct interest in the process, of the assessment that is being conducted. These might include patients and their families, healthcare professionals, healthcare authorities, third party payers, institutional management, etc.
The European network of HTA agencies (EUnetHTA) defines stakeholders as: “Groups or organizations which provide considerable insight into views of the groups they represent, and which will be affected by, or have an interest in, and may in a consultative role contribute to the actions or aims of an HTA organisation, project or policy direction” (source: https://eunethta.eu/wp-content/uploads/2018/01/EUnetHTA-JA-Stakeholder-Involvement-Policy.pdf).
Technology
Although a general definition of technology is hard to give, and there are many discussions on this concept and its nature in philosophy of technology, in the VALIDATE course we use the term to refer to knowledge- and experience-based interventions: drugs, devices, diagnostic tests, or behavioural interventions that allow humans to do something that is of value to them and that they could otherwise not do, or not do equally well or efficient. This definition emphasizes that technology can be conceived as a way of bridging the gap between how humans perceive life to be and how they would like it to be. For instance, less burdensome, with less suffering and limitations, greater freedom, more meaningful and greater mutual engagement. Technology, then, can be thought of as the result of the discovery of how things work, geared to make human lives better in one way or another.
In the HTA glossary (www.htaglossary.net), a definition of technology is given that also emphasizes that it is the application of our understanding of how things work (i.e. scientific knowledge) to practical tasks: “The application of scientific or other organized knowledge – relating to tools, techniques, products, processes, methods, modes or organisation, or systems – to practical tasks”. They also provide a definition of health technology: “An intervention developed to prevent, diagnose or treat medical conditions; promote health; provide rehabilitation; or organize healthcare delivery”.
Note: in healthcare, technology encompasses: drugs; diagnostic tests, including indicators and reagents; devices; equipment and supplies; medical and surgical procedures; support systems; and organizational and managerial systems used in prevention, screening, diagnosis, treatment and rehabilitation.
Well-structured problem
In policy sciences there is an extensive body of literature on how to understand and deal with different types of policy problems. An important typology of policy problems divides them between well-structured, moderately structured and ill-structured problems. Well-structured problems are problems where there is substantial agreement on a number of relevant factual issues (e.g., what is the magnitude and severity of a problem, what are its major causes, what sorts of measures are likely to help alleviate the problem) and on normative aspects (e.g., what is it that restorative or ameliorative measures, whatever they may be, should help to achieve).