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SPECS summary (University of twente)
- Instelling
- Universiteit Twente (UT)
Summary of the course SPECS of the master Health Sciences.
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SPECSLecture 1 Health Preference research
Decision making impacts: Health outcomes, Process outcomes, Non-health
outcomes
Societal level of decision making e.g. ZIN (zorginstituut Nederland) and
EMA (European Medicines Agency), they make a benefit/risk trade-off
Preference-sensitive decisions = a situation where there are two or more
approaches, the evidence of the superiority of one over the two is not
available or does not allow differentiation; in this situation, and the best
choice depends on how individuals value the risks and benefits of
treatments
We need to map the evidence and the value of different outcomes to
the individuals, use the knowledge of what people think is important
to make decisions
Values
- What matters to an individual relevant to a health decision
- Might be directly relevant to the decision (e.g. feelings about a
treatment option) we focus on this
- Might be indirectly relevant to the decision (e.g. cultural beliefs)
-
Three essential elements of decision making
- Judgement: predicting the outcomes of choosing possible options
- Preference: weighing the importance of those outcomes
- Choice: combining judgements and preferences to make decisions
Preferences qualitative or quantitative assessments of the relative
desirability or acceptability of specified alternatives or choices among
outcomes or other attributes that differ among alternative health
interventions
Health preference research (HPR) Research focused on measurement of
preferences for health, health policies, health services and health products
- The aim of HPR is to to understand the value of health and health
related goods and services
- Information gathered by HPR is used to inform decision making by
patients, providers, policy makers etc.
,Different classifications of health preference methods:
- Stated and revealed preference methods
Revealed preferences inferred form observed market
choices
Stated preferences inferred from hypothetical choices (we
ask people)
- Preference exploration and preference elicitation methods
- Rating, ranking, indifference and choice-based methods
- Structured weighing, health state utility, stated preference, and
revealed preference methods
Preference exploration methods Qualitative preference information,
methods that collect descriptive about what matters to patients through
observation and examining the subjective experiences and decisions made
by participants. It is useful in identifying which outcomes, endpoints or
attributes matter to stakeholders and why.
Preference elicitation methods Quantitative preference information,
collect quantifiable data for hypothesis testing about the extent to which
things matter to patients. It can provide estimates of how much different
attributes matter and the trade-offs that stakeholders are willing to make.
,Preference elicitation methods: rating, ranking, indifference, choice-based
methods
- Ranking method ordering preferences based on importance (e.g.
ranking of importance of treatment goals from 1 to 20) a
Alternative: best/worst scaling object case
Pro’s: smaller sets of criteria/attributes lower the cognitive burden
on the study participant,
Con’s: Requires experimental design and more complex analytics,
requires larger number of questions (cognitive burden)
Patient centred care (PCC) respectful of and responsive to individual
patient preferences, needs and values and ensures that patient values
guide all clinical decisions
Decision makers are not always the same as the stakeholders
(stakeholders experience the consequences of the decisions)
Arguments for PCC:
- Ethical (they suffer consequences)
- Legal (sometimes obligatory)
- Effectiveness (improves care)
- Quality
- Sustainability
- Democratic
-
Direct involvement when patients are directly involved in the decision
process, they are at the table with the decision makers/stakeholders and
communicate their values and preferences themselves (allows discussion)
Indirect involvement when patients are indirectly involved in the
decision process, their experiences are communicated by others
(representative, reports), this allows for the presentation of a perspective
that is representative of the total patient population because data
collection instruments (surveys) can be used
, Health outcomes research
PROs and PROMs:
- PROs (patient reported outcomes) reports from patients about
their own health, quality of life or functional status
- PROMS tools and/or instruments used to elicit PROs (surveys or
questionnaires, like the EQ-5D)
- PRE (patient reported experiences) reports of patient experiences
with their care or a health service
- PREMs tools or instruments used to elicit PREs (with questions
about the service provided or experiences)
- HPR (health preference instruments) tools or instruments used to
elicit health preferences, reports about what matters to patients and
how important it is (quantify it)
- Important aspects for PROMS, PREMS and HPR instruments
validity, reliability, sensibility, feasibility, generalizability
PPI (personal and public involvement) actively involves patients and the
public in actual research from conception through to analysis and
dissemination of research findings
- PROs, PROMs and HPR consists of research about patients or to
patients, PPI involves research with or by the public which includes
patients
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