Utilización de la evidencia cualitativa para mejorar la inclusión de las preferencias de los pacientes y otros grupos de interés en las GPC.

Using qualitative evidence to improve
how we include patients’ and other
stakeholders’ perspectives in guidelines
Simon Lewin
Norwegian Institute of Public Health and
South African Medical Research Council
Guías de Práctica Clínica (GPC) y la perspectiva de los
pacientes: Mejorando la toma de decisiones

Outline of presentation
• The growing field of qualitative evidence
synthesis
• How qualitative evidence can inform guideline
development
• The widening influence of qualitative evidence
Jornada Científica 2017

“Qualitative studies provide evidence that
informs health services decision making,
deepens interpretation and understanding,
and assists all to better deal with the
complexity inherent in health problems and
the search for their solutions. Qualitative
insights will also assist in closing the
policy-implementation gap.”
From: Daniels et al. Fair publication of qualitative research in health systems:
a call by health policy and systems researchers. International Journal for
Equity in Health. 2016;15(1):98.

What is the aim of qualitative research?
Aims to explore people’s perceptions and
experiences of the world around them, including of
health, illness and health and social care services
Characteristics:
• Understanding and interpretation
• Naturalistic approach
• How people behave in normal social life
• Multiple perspectives
• Accepts that different social actors have different perspectives on
reality
• Inductive, hypothesis generating (rather than hypothesis testing)
• Reflexive
• Attempts to explicitly consider how researchers interact with the
field of research

Qualitative evidence synthesis: an
emerging field
• A systematic review of primary qualitative
studies in a topic area
• Also aim to explore people’s (service
users, health care providers etc.)
perceptions and experiences of health,
illness, health and social care services,
health technologies
• Their findings are increasingly used in
decision making processes, including in
developing clinical and health system
recommendations (e.g. by WHO, NICE)

Using qualitative evidence
in guidelines

In what ways can evidence from qualitative
research be used in developing a guideline?
1. To define the scope of a guideline
– Inform the populations, interventions, comparisons and outcomes
that each key guideline question should focus on
2. To examine how different stakeholders and population
groups value different outcomes
3. To assess the acceptability and feasibility of the interventions
4. To identify implementation considerations
Many of these uses of qualitative evidence would also
apply to other kinds of decision making processes in health
and social care

Ideally, a guideline or policy should aim to be as
relevant as possible to those affected by it
The scope of the guideline
or policy should therefore
reflect the needs of patients
/ consumers, health care
providers, policy makers,
and other stakeholders

How do we identify what matters to
people?
• Many guideline panels and other
decision making forums attempt
to include representatives of
groups most affected by the
recommendations, such as
consumers
• But while their views are likely to
be important, they may not
represent all groups and views
• Findings from qualitative evidence
syntheses can help ensure that a
wide range of perspectives are
represented in decision making

Qualitative research can help identify the most
relevant populations and interventions
Populations:
• Guidelines tend to focus only on the health
of the patient or person receiving care
• Qualitative evidence can also highlight the
impacts of poor health on others, such as
family members and carers
Interventions:
• Qualitative research may highlight the
importance of particular social or health
system issues for people
• Can therefore help identify health and
social interventions, such as interventions
to improve communication with service
users

Qualitative research can help identify the most
relevant outcomes and how different groups
value these outcomes
• Evidence from qualitative research may:
– Help identify important outcomes
– Show how different groups value different
outcomes - in other words, the extent to
which the potential benefits or harms of an
intervention are important to people
• For instance:
– People of different ages often value the
same health outcomes differently and
patients may value outcomes differently
from their healthcare providers
– Also, a policy-maker may be primarily
concerned about the cost of an intervention
while a patient is more likely to be
interested in pain relief or the experience of
care

Example: WHO guideline on antenatal care (ANC) (1)
• ANC often has a biomedical perspective (for example,
how to identify high risk pregnancies) and access to care
is often assumed
• When developing a new ANC guideline, WHO
commissioned a qualitative evidence synthesis to explore:
– What processes and outcomes in ANC delivery are important to pregnant, healthy
women and those who support them?
– What barriers do women experience in accessing ANC?
• Key themes from the synthesis:
– Women want and need a positive pregnancy experience, including:
• Maintaining physical and sociocultural normality
• Maintaining a healthy pregnancy for mother and baby
• Effective transition to positive labour and birth
– Women experience of wide range of barriers in accessing care

Example: WHO guideline on antenatal care (ANC) (2)
The synthesis findings informed the guideline in two
ways:
1. The scope of the guideline was widened to
include interventions to improve access to ANC
and to enhance the quality of the pregnancy
experience, including:
– Community-based ANC such as home visits
– Interventions to promote continuity of care
– Women held ANC records
– Information and support provision to women and those who support
them
2. The findings informed decisions on critical
outcomes to be considered in the guideline. In
particular, the outcome ‘positive pregnancy
experience’ was included for most guideline
questions

In what ways can evidence from qualitative
research be used in developing a guideline?
1. To define the scope of a guideline
– Inform the populations, interventions, comparisons and
outcomes that each key guideline question should focus on
2. To examine how different stakeholders and population
groups value different outcomes
3. To assess the acceptability and feasibility of the
interventions
4. To identify implementation considerations

Acceptability and feasibility of interventions
Randomized trials provide evidence on the
effectiveness of an intervention, but seldom
provide data on acceptability or feasibility
• Acceptability: The extent to which an
intervention is considered to be
reasonable, satisfactory or adequate to
relevant stakeholders, including
consumers and health care providers
• Feasibility: The extent to which an
intervention is capable of being
accomplished or implemented
These considerations are important when
making clinical, health system and public
health recommendations

Using qualitative evidence on acceptability
and feasibility within a WHO guideline
• This WHO guideline focused on the extent
to which tasks could be moved to health
workers with lower levels of training (“task
shifting”), for maternal and newborn care
• Task shifting can have important benefits
but:
– May require social, behavioural,
organisational and legal changes
– May involve a shift in health care setting as
well as shift in cadre
– May be seen as “second class care for the
poor”
– Can meet with resistance from professional
organisations

What kinds of evidence did the reviews of
qualitative evidence provide?
The reviews showed that the acceptability and
feasibility of task shifting may be influenced by:
• Health worker-consumer relationships
• Health worker-health worker relationships
• Roles of local communities
• Training and supervision
• The availability of supplies and
referral systems
• Incentives for health workers

Example: Should lay health workers provide
continuous support during labour in the
presence of a skilled birth attendant?
 May have important benefits
 Requires little additional training, supervision and supplies
 Mothers appreciate the support
 Midwives appreciate this contribution to their workloads
 Midwives acknowledge lay health workers’ skills in
communicating with mothers
 But some midwives disliked their new, more medical
relationship with mothers – turf battles
 The intervention was recommended: “We recommend the use
of lay health workers to provide continuous support during
labour, in the presence of a skilled birth attendant. However,
appropriate attention must be paid to the acceptability of the
intervention to other health care providers”

In the context of a guideline or policy, we are
concerned with any factor that might influence its
implementation of the recommendations
• These factors may include:
– the views of communities and citizens, patients, health care
providers, and other stakeholders
– service organization for delivery of the intervention or policy
– governance and financial arrangements for the intervention or policy
• Evidence on implementation considerations may emerge directly
from a qualitative evidence synthesis
• Qualitative evidence on acceptability and feasibility can also be
used to formulate implementation considerations by:
– considering the implications of these findings for implementation of
the intervention, and then
– using this information to formulate implementation considerations

Example: Including implementation considerations
in a WHO guideline
WHO recommendation: “We recommend the use of lay (or community)
health workers to provide continuous support during labour, in the presence
of a skilled birth attendant. However, appropriate attention must be paid to
the acceptability of the intervention to other health care providers”
Implementation considerations:
 Lay health workers and relevant professional bodies should be involved
in the planning and implementation of the intervention to ensure
acceptability
 The distribution of roles and responsibilities between midwives and lay
health workers needs to be made clear, including through regulations
and job descriptions
 This intervention implies irregular working hours for lay health workers.
Salaries or incentives should reflect any changes in scope of practice
 Systems need to be in place to support lay health workers who may
need to travel at night in order to assist during labour and delivery

• approach for assessing
how much confidence to place in findings from
qualitative evidence syntheses
• evidence-to-decision frameworks,
which helps decision makers consider a range
of relevant criteria when making decisions
A range of tools to facilitate the use of qualitative
evidence into decision making are now available

The widening influence of
qualitative evidence

A new era for qualitative research?
In this presentation I have tried to show that:
• There is growing awareness of the roles
that qualitative evidence can play in
decision making, including within health
care
• There is increasing use of qualitative
evidence within a range of decision making
processes, including guidelines
• A range of methods and tools are now
available that can facilitate the use of
qualitative evidence in decision making
I would therefore argue that we are now entering a new era
for qualitative research

Qualitative evidence and representation
• Engaging key stakeholders, including patients, is
recognized as key to encouraging participative democracy
and public accountability
• One of the most important functions that qualitative
evidence can play in decision-making is to represent the
views and experiences of a wide range of stakeholders,
including patients but also health care providers and other
groups
• In this way, the wider use of qualitative evidence may
contribute to increased transparency and accountability in
public decision making

“…we need a range of methods at our fingertips if
we are to understand the complexities of modern
health care. "What is involved is not a crossroads
where we have to go left or right. A better analogy is
a complex maze where we are repeatedly faced with
decisions, and where paths wind back on one
another.
The prevalence of the distinction between qualitative
and quantitative methods tends to obscure the
complexity of the problems that face us and
threatens to render our decisions less effective than
they might otherwise be."
From: Pope C, Mays N. Reaching the parts other methods cannot reach: an
introduction to qualitative methods in health and health services research.
BMJ. 1995; 311(6996):42.

Gracias! Thanks!
For further information: simon.lewin@fhi.no

Utilización de la evidencia cualitativa para mejorar la inclusión de las preferencias de los pacientes y otros grupos de interés en las GPC.

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