Involving London

Helpful Information for You

This section will be a regularly updated area for patients and the public where we at Involving London will add any useful information that will enable you to get involved or enhance your understanding and ability to get involved. We also have some useful information in our Frequently Asked Questions page


GLOSSARY

Abstract: a summary of a research paper.
 
Action research: occurs when researchers design a field experiment, collect the data, and feed it back to the activists (i.e. participants) both as feedback and as a way of modelling the next stage of the experiment.
 
Adverse Event (AE): is an unintended response to an intervention, where there is at least a possibility of a causal relationship (i.e. a question of whether or not the intervention might have caused the event).
 
Arm: in a controlled trial relates to the group of participants allocated either to receive particular treatment/intervention (treatment arm) or to receive a placebo (control arm).
 
Baseline Data: is data collected on patients at the start of a study.
 
Bias: describes anything that distorts or affects a study in a way that would alter the findings. It may relate to a number of different elements such as the researchers opinion or how they chose the research participants.
 
Blinding: where the subjects of the research do not know whether they are receiving the treatment or the placebo. If the clinicians do not know either, then this is called double blinding.
 
Case control studies: Studies used to investigate causes of diseases, or to identify adverse or side effects of treatments. These studies identify people who had a particular outcome of interest (the cases) and a control group of patients without the outcome (the controls) and then looking back to see if they were exposed to something that the researchers are looking at as possible cause.
 
Case study: in depth analysis and systematic description of one patient or group of similar patients to promote a detailed understanding of their circumstances.
 
Causation: is when one factor necessarily alters the possibility of a second.
 
Clinical Audit: a service or care which someone receives is evaluated against a set of standards/criteria by the people who provide the care, with the intention of improving the service.
 
Clinical effectiveness is a term used in health care to describe an intervention that does more good than harm.
 
Clinical Trial: is a study in humans intended to discover or verify the effects of a medical product, to identify adverse reactions and to examine safety and efficacy.
 
Cochrane Review: is a systematic summary of the evidence of the effects of healthcare interventions, e.g. looking at all the research relating to a specific topic and finding the common issues and differences.
 
Cohort studies (or follow up studies): Studies which begin with a group of people (the cohort) free from disease but who have been exposed to a potential cause of disease or outcome. The cohort is followed up to see the subsequent development of new cases of the outcome of interest. Cohort studies provide the best information about the causation of disease and the most direct measurement of the risk of developing disease. They can also be used to measure the outcome of treatments or exposure when, for ethical reasons, it is not possible to perform an RCT or to investigate the effects of a rare exposure.
 
Confidentiality Agreement: is a legal agreement to protect confidential information revealed during discussions or negotiations with another party. It applies to both organisations and individuals and is likely to contain clauses covering protection of people against the copying or retention of confidential information, disclosing information that is not already in the public domain to a third party and remedy for a breach of the agreement.
 
Controls: is the comparison group in a Random Controlled Trial. They receive the usual treatment (or a placebo) while the experimental group receives the treatment being tested.
 
Content analysis is a form of data analysis in which the data is searched for the meanings or themes held within it. The researcher develops brief descriptions of the themes or meanings, called codes. Similar codes may, at a later stage in the analysis, be grouped together to form categories.
 
Critical Appraisal: the process of assessing and interpreting research evidence, by systematically considering the results of the research, and establishing how valid the evidence is and how relevant it is to your own work.
 
Data analysis is a systematic process of working with the data to provide an understanding of the research participant’s experiences. While there are several methods of qualitative analysis that can be used, the aim is always to provide an understanding through the interpretation of the data.
 
Direct Observation: the process of watching participants directly in the natural setting. Observation can be participative (i.e. taking part in the activity or non -participative).
 
Dissemination: the communication of research findings to a wider audience through, for example, publication in medical journals, the media, and voluntary organisations’ newsletters.

DRN: Diabetes Research Network. 
 
Efficacy: refers to whether the intervention worked or not.
 
Empirical Evidence: relates to collection of data in the real world and based on observation rather than through assumption and abstract development of an argument using reasoning alone.
 
Epidemiology: the study or populations or communities rather than individuals.
 
Ethics: is the name given to the code of practice based on a set of decent, fair and moral principles and guidelines that researchers should abide by. Research that will seek to gain personal confidential information or to test a new intervention on people must get ethical approval from an Ethics Research Committee (REC).
 
Ethics Research Committee (REC:) groups pf professionals and service users that review the ethical considerations of research studies.
 
Ethnography is a qualitative research methodology that enables a detailed description of a culture or subculture to be generated. Data collection usually takes place through observation, interviews or the study of existing text. The importance of gathering data in context is stressed, as only in this way can an understanding of social processes and the behaviour that comes from them be developed.
 
Focus groups are used to elicit the views of a group (usually around six to ten individuals) that have common experiences or interests. They are brought together with the purpose of discussing a particular subject, under the guidance of a facilitator.
 
Grey Literature: material that has not been published in easily accessible journals or databases. An example might be an unpublished thesis.
 
Grounded theory is an approach to the collection and analysis of qualitative data. The overall aim of grounded theory is to generate a theory that is ‘grounded in’ or formed from the data. This contrasts with other approaches that stop at the point of describing the participants’ experiences.
 
Hypothesis: an unproven theory tested through research – rather like a hunch.
 
Incidence: the number of new occurrences of something in a population over a period of time.
 
Inclusion Criteria: describes the conditions or attributes of people that are eligible to take part in a trial.
 
Interviewing is a data collection strategy. Participants are asked to talk about the area under consideration. Interviews can be:
  • Focused interview: a loosely structured interview in which the interviewer guides the respondent through a set of questions using a topic guide.
     
  • Unstructured: the researcher asks the respondent a general question regarding the area of interest and allows them to tell their own story.
     
  • Semi-structured:The interviewer has a more focused agenda than in an unstructured approach. Questions are phrased to allow the participants to tell the story in their own way and an interview guide is used to ensure information is gathered on areas of interest to the researcher.
     
  • Structured interview: an interview in which the questions are predetermined and asked to all subjects
     
Mean: the average value. The mean age of a group of people would be calculated by adding up all the ages and dividing the result by the number of people in the group.
 
Median: The middle result or mid point when all the data values are put in sequential order.
 
Meta-analysis: a statistical technique, which summarises the results of several studies into a single estimate. More importance is given to studies, which have been done with larger groups of people.
 
NIHR: The National Institute for Health Research is the NHS led organisation that governs and fund all NHS research.
 
Observation is a strategy for data collection involving the watching of participants in a natural setting. Observation can be participative (the researcher takes part in the activity) or non-participative (the researcher watches from the outside).
 
Outcome: The result being looked for in a trial e.g. stopping smoking.
 
Placebo Therapy: an inactive (dummy) treatment often given to controls in trials. The placebo is delivered in a form, which is apparently identical to the active treatment being tested in the trial, in order to eliminate psychological effects on the outcome.

PPI : Patient and Public Involvement, also called user involvement. This refers to the active involvement of patients and the public in research, where patients and the public work with researchers, rather than being the subjects of research
 
Publication Bias: results from the fact that studies with 'positive' results are more likely to be published.
 
Qualitative research: studies things in their natural setting and cannot always be expressed in numbers. Often the term “holistic” is used, meaning that the complexities of human behaviour are preserved in the study. An example would be a research study into how children develop with or without attending preschool.
 
Quantitative research: collects data that can be expressed in numbers. An example of a quantitative research study would be one that compares the use of an antibiotic or placebo for the treatment of acute cough. A hint for remembering – quantity is measured, counting numbers.
 
Randomised controlled trial (RCT): a research trial in which subjects are randomly assigned to two groups: one (the experimental group) receiving the intervention that is being tested, and the other (the comparison group or controls) receiving no treatment or a conventional treatment. The two groups are then followed up to see if any differences between them result. This helps people assess the effectiveness of the intervention.
 
Research question defines the reason for the research; It describes the area of the study and what the researchers want to learn about it.
 
Sampling is the process of selecting participants to take part in the research on the basis that they can provide detailed information that is relevant to the enquiry.
  • Purposive sampling is the selection of participants who have knowledge or experience of the area being investigated.
     
  • Theoretical sampling is a sampling strategy in which the selection of participants is guided by the ideas that are emerging from the data analysis.
 
Saturation of data refers to the point at which no further themes are generated when data from more participants are included in the analysis. The sampling process can be considered to be complete at this point.
 
Significance: the difference seen between the control group and the treatment group will only be significant if it is unlikely to have occurred by chance. This is typically agreed to be the case if the likelihood of it having happened by chance are less than 5%.
 
Systematic review: A review,in which evidence on a topic has been systematically identified, appraised and summarised according to predetermined criteria. (Some people call this an ‘overview’).
 
Transferability means that the research findings can be transferred from one context to similar situations or participants.
 
Trial: a study of the effects of an intervention.
 
Triangulation is a process by which the area under investigation is investigated from different (two or more) perspectives. These can include two or more methods, sample groups or investigators. Triangulation can be used i) to ensure that the understanding of an area is as complete as possible by the use of data from one or more different sources or ii) to confirm interpretations through the comparison of different data sources.
 
Validity: refers to the soundness or rigour of a study. A study is valid if the way it is designed and carried out means that the results are unbiased that is, it gives you a 'true' estimate of clinical effectiveness of a treatment.



With thanks to Macmillan Cancer and James Lind Alliance for use of their glossaries.