Week 6 - Data collection and outcomes

Question 1

What are outcomes in a study?

Answer 1

Are variables that are monitored during a study;
- they document the impact that a given intervention or exposure has on the health of a given population.
- Need to be specific and measurable
- Primary and secondary outcomes: both need to be decided on a priori and are assessed at baseline and follow up

Primary outcome
- main endpoints of interest, ie the variable that is the most relevant to answer the research question. Ideally, it should be patient-centered (i.e.,an outcome that matters to patients, such as quality of life and survival).

Secondary outcomes
- additional outcomes monitored to help interpret the results of the primary outcome
* Can be individual, population based or health care systems outcomes

Question 2

Important health outcomes often include:

Answer 2

• Mortality rates
• Readmission to hospital
• Timeliness of care
• Effectiveness of care
• Patient experience
• Safety of care

Question 3

Why are outcomes important?

Answer 3

Measuring health outcomes allows us to make decisions about how to best care for our patients and outcome measures help us predict the patients who might benefit most from a particular intervention. It helps us identify any improvement after an intervention is provided.

Question 4

What do outcome measure?

Answer 4

• Mortality
• Readmission to hospital
• Timeliness of care
• Safety of care
• Effectiveness of care
• Patient experience

Question 5

Data collection in quantitative research

Answer 5

• Physiological/ biological data
• Observational data
• Questionnaires: self-reported data

Question 6

Physiological/ biological measurements

Answer 6

Consider:
- Objective physiological data are less prone to bias (eg observer bias, recall bias) and patient effects
- Collection of data needs to be consistent and reliable (measurement bias)
- Requires standardised equipment
- However an apparent objective outcome can be affected by environment
- Ensure your device measures the variable of interest

Question 7

Observational methods

Answer 7

observational methods need to be:
- Purposeful: consistent with the study’s objective
- Systematic: there is a plan to which and how observational data are collected (protocol)
- Standardised: all researcher use the same protocol for observations
- Related to scientific concepts and theories: how do observations relate to a framework underpinning your research
- Observations can also be concealed or open.

Question 8

Questionnaires (self-reported data)

Answer 8

Questionnaires allow for collection of self-reported data

Question 9

Questionnaires: Validity and reliability testing

Answer 9

• Does it measure what is claims to measure? → valid
• Does it produce consistent results from repeated samples (and different researchers) over time? → reliable
• Who collects the data?

Question 10

Questionnaires: Existing questionnaires:

Answer 10

• Standardised
• Allows for comparison
• But consider validity

Question 11

Questionnaire development

Answer 11

• Where to start: usually starts with qualitative research
• What to include: remember what you are trying to measure; your items need to include that
• You cannot measure what is not in your questionnaire!

Question 12

How to structure questionnaires (methodological and end user consideration)

Answer 12

• One answer selection
• Likert type scale
• VAS
• Symbols
• Open comments

Question 13

Collecting existing patient data – big data sets

Answer 13

Makes use of existing data sets (eg electronic patient records, census) rather than having to collect new data:
- Time and cost efficient
- Patient burden
- Routinely collected health care records
- Allows for exploration of trends over time

But consider:
- Ethics
- Representation of data/ recording bias
- Completeness and accuracy of data

Question 14

Patient reported outcomes (PROMS)

Answer 14

why do they matter?
- important to understanding whether health care services and procedures make a difference to patients’ health status and quality of life.
- provide insight on the effectiveness of care from the patient’s perspective.
- questionnaires measuring the patients’ views of their health status.
- Focusing health research and ultimately improvement of care delivery on what matters to patients, changes our priorities and research focus

Patient-reported experience measures (PREMs) are questionnaires measuring the patients’ perceptions of their experience whilst receiving care.