Identifying & framing the

questions to ask patients

Ann Single

Communication & Public Involvement

Australia

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

Getting to know you

Which of these statements best describes you?

I have:

experience of involving patients/public in

HTA/research

no experience of involving patients/public in

HTA/research, but plan to in the future

no experience of involving patients/public in

HTA/research & do not plan to in the future

wandered into the wrong workshop

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

Basic motivation

Which statement best describes you

(or the culture of your organisation)?

I believe it is ethically important that

the public are involved in health

research

I believe that involving the public will

increase the value of health research

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

Nature of relationship with

patients

Who’s voice is going to be privileged in the final

report?

The researcher’s voice

The patient’s voice

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

Consultation

Collaboration

User control

Before we ask questions we

prepare

Reflect

Talk Read

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

Questions come from ...

Literature (including grey literature)

Experience

Discussions with colleagues

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

Patients (including patient organisations)

How do we hear patient

questions?

Build relationships with patient organisations

Visit patient organisations & events

Form panels

Read their publications & websites

Advocates & carers

Focus groups

_____________

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

The nature of research

Research should

be objective

Strongly

disagree

Somewhat

disagree

Somewhat

agree

Strongly

agree

All research is

subjective

Strongly

disagree

Somewhat

disagree

Somewhat

agree

Strongly

agree

Please rate how strongly you agree or disagree with each

of the following statements

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

What sort of things might we

find out?

Beliefs & cultural values around health

Satisfaction with services/treatments

Health-seeking behaviours

Medical decision making

Patient preferences

Health disparities

Other: ________

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

Attributes of a good question

Please rank the following attributes in

order of importance?

Salience (meaningfulness for patients)

Room to grow (to focus ... to learn)

Relevance (can you act on results)

Congruence (with methodology)

Other: __________________

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

Questions, questions ...

Is there one you always ask?

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

In order for qualitative research to

make a significant contribution,

advocates of this approach must

demonstrate its ability to address

questions of relevance and

proponents of EBM must rethink

their ideas as to what may

constitute a research question

Barbour (2000) p. 155

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

Good qualitative research is

characterised by congruence between

the perspective (or paradigm) that

informs the research questions and

the research methods used.

Fossey, Harvey, McDermott, Davidson

(2002) p. 731

In an involving research

environment

Patients/citizens are key source for identifying

research questions

The questions you ask will be influenced by

your values & beliefs about involvement

The research questions must be congruent to

the purpose of the inquiry & methodology

The questions must be salient to the

patients/citizens

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007

Thanks

UCB Pharma for sponsoring me

Patient/Citizen Involvement in HTA Workshop,

Barcelona June 2007