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Ophelia Manual How to apply the Ophelia health literacy process for improving health outcomes
Authors Editors: Dr Alison Beauchamp, Dr Sarity Dodson, Mr Roy Batterham, Mr Dino Asproloupos, and Professor Richard Osborne Contributors: Ms Silvana Cavalli, Ms Christina Cheng, Ms Melanie Hawkins, Ms Kirsten Phillips, and Ms Jayne Power. Cover and inside design, and layout: RoscherCreative Funders: Australian Research Council, Victorian Government, Deakin University, Monash University Suggested citation Beauchamp A, Dodson S, Batterham RW and Osborne RH. Ophelia Manual – How to apply the Ophelia health literacy process for improving health outcomes. 2017. © Swinburne University of Technology, 2019 Keywords 1. Health literacy 2. Health service access 3. Consumer health information 4. Health management and planning 5. Health inequity 6. Health promotion This research was supported under Australian Research Council’s Linkage Projects funding scheme (project LP120200111). The Victorian Department of Health contributed funds and in-kind support to the project. The views expressed herein are those of the authors and are not necessarily those of the Australian Research Council or the Victorian Department of Health.
Contents
About the Ophelia manual 01
Overview of the Ophelia approach 03
Phase 1 Overview – Identifying local strengths, needs and issues 05
Case Study 1 06
Step 1: Project set-up 07
Activity 1.1 Identify a project focus, scope and overall aim for the project 08
Activity 1.2 Establish a project team and identify roles and responsibilities 10
Activity 1.3 Identify existing sources of data and gaps in available data 11
Activity 1.4 Establish project time frames and budget 12
Step 2: Data collection and/or extraction 15
Activity 2.1 Establish a data collection plan 17
Activity 2.2 Obtain ethical and other required approvals 21
Activity 2.3 Collect and / or extract data 22
Activity 2.4 Prepare materaials for the consultation activities 23
Step 3: Consultation to identify new ideas 28
Activity 3.1 Establish a consultation plan 31
Activity 3.2 Make arrangements required for the consultation workshops 32
Activity 3.3 Undertake the consultation workshops 32
Activity 3.4 Prepare a brief summary of the results of the workshops 35
Phase 2 overview – Co-production of interventions 38
Case Study 2 39
Step 4: Intervention design 40
Activity 4.1 Confirm the project focus, scope and aim for the project, and specify the intervention objectives 42
Activity 4.2 Conduct a rapid literature review and search for existing interventions 43
Activity 4.3 Identify which intervention ideas from the workshops match your newly established intervention objectives. 45
Activity 4.4 Select an intervention (or intervention package) 46
Activity 4.5 Work through the logic of your intervention – specifying how it will achieve its objectives 47
Step 5: Intervention planning 51
Activity 5.1 Identify members of your project team, identify roles and responsibilities 53
Activity 5.2 Identify a set of project milestones, and associated activities 54
Activity 5.3 Develop an evaluation plan 57
Step 6: Intervention development and refinement 61
Activity 6.1 Purchase or develop the materials, training, and processes detailed in the implementation and evaluation plan 63
Actvity 6.2 Undertake Quality Improvement (QI) cycles to pilot test materials, training and processes 63
Activity 6.3 Refine materials and processes based on findings of QI cycles 64
Phase 3 Overview – Implementation, evaluation and ongoing improvement 67
Case Study 3 68
Step 7: Implementation and evaluation 69
Activity 7.1 Refine implementation and evaluation plan 71
Activity 7.2 Implement the intervention(s) 71
Activity 7.3 Undertake evaluation activities 71
Step 8: Development of an ongoing quality improvement strategy 73
Activity 8.1 Identify intervention components to be embedded into usual practice 75
Activity 8.2 Develop a continuous Quality Improvement plan 75
Introduction
About the Ophelia manual
The Ophelia manual is a step-by-step guide for how to use the Ophelia approach to
identify and respond to issues that people have when
accessing and engaging with health and health care.
An important determinant of health outcomes is
the extent to which people access and use health information
and services. Considering the barriers
and facilitators to people’s engagement with health
information, health care, and health management activities
are critical aspects of a person-centred approach to care.
This manual outlines a set of practical steps that organisations
can take to identify and address locally-relevant issues relating
to access and engagement
with healthcare services and information.
Ophelia Manual About the Ophelia Manual PAGE 1
The Ophelia manual provides a step-by-step guide BOX 1 / Is the Ophelia approach suitable
to using the Ophelia approach. It is the first in a series of three for my organisation, community or project?
documents. The manual contains:
Consider the following key questions:
• an overview of the three phases of the Ophelia approach
• a detailed description of steps and activities involved in 1. Are there suspected or known issues about
each phase, and suggestions for implementation of these activities the way in which clients access or engage
including indicative time frames for each step with health information, health care or health
management activities?
Within this manual you will find case studies and examples
describing how the Ophelia approach can be used in different 2. Do you think health literacy may be contributing to
settings. The manual is supported by an Ophelia Templates and these issues?
Additional Resources document that provides supporting tools,
templates, and examples. 3. Is there a will in your organisation or community
and are there resources available to explore the
The background document Ophelia toolkit provides an overview nature of these issues and work collaboratively to
of the Ophelia approach, as well as key definitions and issues identify and test solutions?
relating to health equity, health literacy, and health service and
information access. It offers background reading that will assist
you to effectively engage in activities to address local issues of
concern.
The Ophelia approach provides a method and supportive tools that organisations,
communities and projects can use to systematically
identify and respond to local issues of access and engagement. Ophelia
Templates
and Additional
Resources
Ophelia Toolkit Ophelia Manual Templates and resources to support
application of the Ophelia Manual
A step-by-step guide for identifying and responding to How to apply the Ophelia health literacy
health literacy needs within local communities process for improving health outcomes
Ophelia Manual About the Ophelia Manual PAGE 2
Introduction
Overview of the
Ophelia approach
The Ophelia approach has three phases of activity. The Ophelia
manual provides a step-by-step guide through these phases.
The Ophelia approach involves the collaboration of a The Ophelia Phases: 1 to 3
wide range of people and groups, such as community members
and leaders, healthcare workers, managers Phase 1 involves using local data to identify local needs,
and service users. strengths and issues, and working collaboratively with local
stakeholders to identify potential responses.
The purpose of Ophelia projects is to develop interventions that
respond to identified access and engagement issues. Each Phase 2 involves local stakeholders making decisions about local
Ophelia project seeks to improve health and equity priorities for action, and working together
by increasing the availability and accessibility of health to design and plan interventions.
information and services in locally-appropriate ways.
Phase 3 involves implementing and evaluating planned
interventions, and devising strategies for ongoing quality.
improvement.
Phase 1 Phase 2 Phase 3
Identifying local strengths, Co-production of Implementation, evaluation
needs and issues interventions and ongoing improvement
Ophelia Manual Overview PAGE 3
Phase 1 Phase 2 Phase 3
Identifying local strengths, Co-production of Implementation,
needs and issues interventions evaluation and ongoing
improvement
Local data about health, health Local stakeholders make Health literacy interventions
behaviour, service engagement, decisions about local priorities are applied within quality
organisational responsiveness, for action.Interventions with improvement cycles:
and health literacy are potential to respond to local organisations develop
systematically collected (or health literacy challenges, or and implement trials,
extracted from existing data to improve information and actively evaluate and
sources). These data are and service access and improve the effectiveness, local
analysed and presented to availability, are designed and uptake and sustainability of the
stakeholders for discussion and implementation interventions.
interpretation. Effective is planned.
local practices and innovative
intervention ideas are then
identified.
Step 1: Project set-up Step 4: Intervention Step 7: Intervention
design implementation and
Step 2: Data collection and/ evaluation activities
or extraction Step 5: Intervention
planning Step 8: Development of
Step 3: Consultation to an ongoing quality
identify new ideas Step 6: Intervention improvement
refinement strategy
Ophelia Manual Overview PAGE 4
Phase 1 Overview
Phase 1 Overview –
P1 Identifying local strengths,
needs and issues
Phase 1 of the Ophelia approach involves using local data to identify
local strengths, needs and issues, and to work collaboratively with
local stakeholders to identify potential responses.
During Phase 1, local data about health, health behaviour, These data are examined and presented to stakeholders for
service engagement, organisational responsiveness, and health discussion and interpretation. Effective local practices and
literacy are systematically collected (or extracted from existing innovative intervention ideas are then identified. This phase
data sources). involves three steps:
Phase 1: Steps 1 to 3
Step 1: Purpose: To define the project aims Time frame: 1 to 2 months
Project set-up and scope, and to identify staff who
will be involved.
Step 2: Purpose: To source local data and Time frame: 2 to 6 months
Data collection use this to identify local needs, (depending on complexity and
and/or extraction strengths and issues. breadth of data and sample)
Step 3: Purpose: To identify effective local Time frame: 1 month
Consultation to identify practices and innovative
new ideas intervention ideas.
Ophelia Manual Phase 1 PAGE 5
Case Study 1
Identifying local strengths, needs and issues
Background
This project was undertaken with a community nursing Interested staff were orientated to the project and trained in
service that delivers nursing care to clients in their home, administering the HLQ in a 40 minute session, including
including wound care and medications support. practicing administering the questionnaire
A key part of the nurses’ role is to provide education to each other. The project was conducted as a research study
for clients so they can better self-manage long-term and so nurses were required to recruit clients
conditions such as diabetes. and obtain their written or verbal consent before
administering the HLQ. During the training session, nurses
Step 1: Project set-up were provided with strategies to ensure that clients did not feel
any pressure to participate.
A local issue of concern, as identified by the service,
was that many clients with diabetes found it hard to put into Data collection took 3 months, and nurses were able
practice the daily activities required to manage their to integrate this into their routine visits. Some clients were
condition. The service decided to focus on enhancing their happy to complete the questionnaire in their own time, others
clients’ understanding and capacity to undertake self- required assistance, either from their nurse or a family
management activities. For their project scope, member. If the client became tired during administration, the
they selected people over the age of 70 years with type nurse was able to finish the questionnaire at the next visit
2 diabetes and chronic leg wounds. The project aim was because most clients
to increase the proportion of clients who actively engaged in were seen at least twice a week. Interviews were conducted
self-management of their condition. with 6 clients to provide further context
to the needs assessment.
The team comprised four diabetes nurse practitioners
who were team leaders for diabetes management across Step 3: Consultation to identify new ideas
several sites. The overall project lead was the manager
of the service’s research department, and two senior managers Data were analysed to show overall HLQ scores and
were involved in initial meetings to garner executive support. demographic characteristics of the 117 clients who completed
the questionnaire. Cluster analysis was combined with
Step 2: Data collection and/or extraction interview findings from 6 clients to develop a set of 6
vignettes, each clearly describing
Nurses at 5 of the service sites were invited to recruit clients
the effect of people’s health literacy on their ability
and collect health literacy data using the Health Literacy
to self-manage their diabetes. These vignettes and
Questionnaire (HLQ). Demograpic questions were included
data were presented in a 3-hour workshop with 8 experienced
at the end of the questionnaire.
nurses, including the diabetes nurse practitioners. In total, 34
full or partial intervention
ideas were generated from the workshop; these were presented
as a summary report for discussion.
Ophelia Manual Phase 1 PAGE 6Step 1: Project set-up
S1
Phase 1
The purpose of Step 1 is to define the project aims and scope,
and establish a project team.
Step 1 of the Ophelia approach involves four activities that seek to ensure the project has a clear direction and includes
the right people and resources for success.
Step 1: Purpose: To define the project aims Time frame: 1 to 2 months
Project set-up and scope, and to identify staff who
will be involved.
Activities:
1.1 Identify a project focus, scope and overall aim for the project
1.2 Establish a project team and identify roles and responsibilities
1.3 Identify existing sources of data and gaps in available data
1.4 Establish project time frames and budget
Ophelia Manual Step 1 PAGE 7Why do Step 1 of the Ophelia process? Activity 1.1
Identify a project focus, scope and overall aim
for the project
Step 1 will allow you to define a priority The output of this activity is a clear statement describing
issue for your organisation or community, the project focus, scope and aims.
and identify how this aligns with your
organisation’s strategic plan. See Box 1 for examples.
Consider the following as you undertake this activity:
1 Are there suspected or known issues about the way
in which clients or community members:
• access or engage with healthcare services
Step 1 will provide you with in-depth knowledge of or providers,
the data available within your organisation and of • access or engage with health information, or
how you might use that data to make decisions • engage in health management activities?
about this project 2 Are there issues with the way services support clients to
and others. access or engage with healthcare services, information or
health management activities?
3 Does the organisation have to meet strategic priorities or
quality standards about these access and engagement issues?
4 Are there other local initiatives that focus on improving
Step 1 allows you to engage key members access and engagement?
of the project team and create a sense
of ownership and excitement about the project and
its potential. Engaging people
Health literacy and your service.
and achieving a common understanding of the
project aims at the outset of the Ophelia process is When defining your scope, it is important to remember
a key ingredient for success. that health literacy affects how people engage with and
benefit from health services.
Consider:
1 How easy is it for people to find out what your
service does?
2 Do people enrol in your service, but then drop out?
3 Are your services tailored to people’s needs
or abilities?
4 How well do your service providers engage
with clients?
Ophelia Manual Step 1 PAGE 8BOX 1 / Examples of project focus, scope and aim
• Project focus = What issue do you want to address?
• Project scope = Who is your target group? Who do you want to reach?
• Project aim = What do you want to achieve and by when?
Example 1
Project focus: Limited awareness of a primary health centre’s services within the local community
Project scope: All eligible community members
Project aim: To increase the proportion of eligible people accessing the service within 6 months
Example 2 (see case study, page 6)
Project focus: Clients with diabetes attending a service are not engaged in active self-management
Project scope: People over 70 years with Type 2 diabetes who are clients of the service
Project aim: To increase the proportion of clients who actively engage in self-management of their condition
Example 3
Project focus: Low rates of participation in screening for breast cancer among new migrants in a region
Project scope: Women from new migrant groups in the area who are eligible for free breast screening
Project aim: To increase the proportion of women from new migrant groups who receive breast screening
to the national average within 2 years
Carefully consider your project focus, but don’t get too weighed down by the task.
• It can be daunting to start from a blank page and identify a project focus, scope and aim.
• Careful consideration of the issues at hand is important, but do not strive to identify the perfect
project focus.There will be opportunity to refine the details later.
Ophelia Manual Step 1 PAGE 9Activity 1.2 BOX 2 / Example of project team membership
Establish a project team and identify roles
Project manager
and responsibilities
Role: To act as project lead and key project contact
The output of this activity is a list of members Responsible for the initial engagement of project stakeholders,
of your project team/s and a brief description of their for reporting to senior management, for project planning, and for
roles and responsibilities within the project. ensuring deliverables are met on time.
See Box 2 for an example. Project officer
Consider the following as you undertake this activity: Role: To undertake day-to-day project tasks and manage project
communications
1. Who will lead the project and act as the key liaison
for all the project stakeholders? Responsible for undertaking and/or supporting other team
members and stakeholders to undertake project activities;
2. Who will be responsible for communication and
ensuring project updates are provided regularly to stakeholders,
engagment with senior management and all other
and keeping the project manager informed about progress of
project stakeholders?
activities.
3. Who will do the work on a day-to-day basis?
Data officer
4. Who will provide the expertise needed for project
planning and implementation? Role: Data management
5. Who will provide expertise about the project focus? Responsible for the extraction of data from organisational
6. Who will ensure the project delivers on planned databases, the management of data sets, and data analysis and
milestones effectively and on time? reporting.
7. Do the proposed members of the project team have Clinical or frontline team members
an invested interest in achieving the project aim?
Role: To provide a clinical, on-the-ground perspective
8. Have project team members read the Ophelia
To provide input during project planning and implementation,
manual? This is an important first step in
and to participate in the development
developing a common understanding of the
of project materials and outputs.
steps required to conduct an Ophelia project.
Collectively, the members of the project team/s should
have all the relevant skills needed to plan and
implement the project.
How big should the project team be?
Membership of the team may change over
The size of the project team will depend on the size of
the course of the project.
the organisation, the overall number of staff likely to be
participating in the project, and the number of participating
program areas.
If there is a large number of team members, consider creating a
central project management team, with working groups to
undertake particular activities.
Ophelia Manual Step 1 PAGE 10Activity 1.3 BOX 3 / Examples of data types that may be required
Identify existing sources of data and gaps in available data for a needs assessment within a project to reduce falls in
elderly community members
The output of this activity is a preliminary list of the data
required for the needs assessment (which is Step 2 of the Health literacy strengths and challenges data
Ophelia approach). Aspects of health literacy: The target groups’ capacity to
find, understand and use information and services for
The purpose of this activity is to scope potential data
falls prevention
requirements and consider how these data may be obtained.
Source: No existing data source
Details of how to develop a data collection plan are shown in
Process: Conduct surveys (using the HLQ)
Activity 2.1.
and interviews
Box 3 provides examples of data types that may be required for a Health status or outcomes data
needs assessment. Some data will already
be available, while other data will need to be collected. Health outcomes of interest: Prevalence of falls
in the local community among people aged over
Consider the following as you undertake this activity: 75 years
Source: Local government data
1. When thinking about the project focus, scope and aims, Process: Obtain reports via the local government
consider what data is needed to inform the project team
about the target group and its varying: Health / health care engagement data
• health literacy strengths and challenges Behaviours of interest: Number of people accessing falls
• health status or outcomes prevention programs in the local community
Source: Local health service data
• engagement with health care and health activities Process: Obtain reports directly from health services
• perspectives on barriers and facilitators to engagement
with health services and health behaviours Barriers and facilitators data
• socio-demographic characteristics Barriers and facilitators of interest: Perspective of
• health or community services use? people in the target group on barriers and facilitators to
engaging in falls prevention
2. Which of these data already exists (within the organisation, or Source: No existing data source
from local, regional or national bodies)? Process: Combination of surveys (specific questions
3. What is the process involved in gaining access to these developed and added to the HLQ)
existing data? and focus groups or interviews
4. Which of the above data types don’t you currently have
access to, and which could be collected as part of this
project?
5. What methods could be used to collect the data needed?
Ophelia Manual Step 1 PAGE 11Activity 1.4 BOX 4 / Example statement of project time frames
Establish project time frames and budget
Step Time frame
The output of this activity is a statement of the time frames
1: Project set-up 1 to 2 months
allowed for each step of the project, and the budget available to
the project. 2: Data collection 2 to 3 months
See Box 4 for an example of the statement of project 3: Collect response ideas 1 month
time frames.
4: Intervention design 1 to 3 months
Time frames and budgets will vary from project to project
5: Intervention planning 1 to 3 months
depending on factors such as scope, how complex the data
collection strategy is and the resources available. The example 6: Intervention development 2 to 4 months
provided is designed to act as a guide only.
7: Implementation 3 to 9 months
Consider the following as you undertake this activity: and evaluation
• How much time do team members have available 8: Ongoing quality 1 month
to spend on the project? improvement
• What expenses (if any) will the project incur?
• What funds are available?
• Are there deadlines imposed by funding bodies
or management?
• Which of the project activities can be embedded
in current roles, and can make use of existing Potential project risks
communication channels?
At this stage, the project team should brainstorm,
• Given your deadline for completing the project, prioritise and review the potential issues that might arise
how long could you allow for each of the steps during the project, including:
of the Ophelia approach?
• Staff illness and leave
Check your time frames are realistic, given the available staff • Delays or challenges with collecting data
time and funds. Make note of where you have flexibility to allow • Delays or challenges with consultation activities
additional time within particular
• Organisational changes
project phases.
• Competing demands
Refer back to the budget and project time frames
when planning activities for the steps later in the process. Limit
or expand the scope of activities to match time and funding
constraints.
Ophelia Manual Step 1 PAGE 12Step 1 / Tips and key considerations
Consider leveraging off past, ongoing or planned projects Accessing existing population health data
Find out if there are (or have been) other projects in the area Many government agencies and professional organisations
with similar aims. Consider how this new project can: collect, source or manage population health data. There is likely
• Build on previous local initiatives to be population data available about the focus that the project
seeks to address.
• Join forces with current local initiatives
Search government and professional organisations’ websites,
phone or email these organisations, or speak to people in your
Changing clients’ experiences of a service
local area that might have knowledge about these existing data
An underlying premise of Ophelia projects is that the activities sources and how to access them.
or interventions should improve clients’ experiences when
Often the statistics needed for the background of the project are
interacting with health information
available in public reports. If more targeted information is
and services.
needed than what is publicly available, it can be requested from
Examples of improvement in clients’ experiences include feeling the government and professional organisations.
that a practitioner has listened better than before, that
information is easier to understand and use, and that navigating
through
a health service has been made more simple.
Consider how to achieve multiple objectives
Your organisation is likely to have a strategic plan and may be
required to meet quality or accreditation standards and program
or policy guidelines set by funders. Patient centred care and
issues relating to service access and equity often feature within
these plans, standards and guidelines. Align the project with
these and it will be easier to gain and maintain senior level
support for
the project.
Ophelia Manual Step 1 PAGE 13The Ophelia Templates and Additional Resources guide contains resources to support application
Ophelia of the Ophelia process.
Templates The templates and resources are designed for use at all stages of project planning,
and Additional implementation and evaluation
Resources
Templates and resources to support In addition to templates for each activity described in Step 1, the Ophelia Templates and
application of the Ophelia Manual
Additional Resources guide contains the following resources and tools to help you complete Step
1.
Activity 1.1 More examples of projects’ focus, scope and aims
Useful links for Step 1 activities
Examples of where to find population health data
Victorian Department of Health and Human Services – local government area profiles http://
www.health.vic.gov.au/modelling/planning/lga.htm
New Zealand Ministry of Health – http://www.health.govt.nz/nz-health-statistics/national-
collections-and-surveys/surveys/current-recent-surveys/new-zealand-health-survey
Public Health England – https://www.gov.uk/guidance/phe-data-and-analysis-tools
Ophelia Manual Step 1 PAGE 14Step 2: Data collection
S2 and/or extraction
Phase 1
The purpose of Step 2 is to collect and use local data to identify
local needs, strengths and issues. Understanding the nature
of the problem allows development of fit-for-purpose solutions.
Step 2 of the Ophelia approach involves four activities that seek to make collection and use of data as effective and efficient
as possible.
Step 2: Purpose: To source local data and Time frame: 2 to 3 months
Data collection and/or extraction use this to identify local needs,
strengths and issues.
Activities:
2.1 Establish a data collection plan
2.2 Obtain ethical and other approvals required
2.3 Collect and/or extract data
2.4 Prepare materials for the consultation activities
Ophelia Manual Step 2 PAGE 15Why do Step 2 of the Ophelia process?
Step 2 will provide a clearer picture of the factors
that affect a client’s or community’s ability to
access, understand, appraise and use information
and services to make decisions about health.
Step 2 will provide a set of stories (vignettes) about
how people’s health literacy affects their ability to
look after their own health and that of their
families.
Step 2 will generate a suite of intervention ideas
from experienced practitioners and health workers
who know the client group
or community really well and who have a wealth of
experience in what works and doesn’t work in the
local setting.
Ophelia Manual Step 2 PAGE 16Activity 2.1 recruiting a group in which health behaviour might be
Establish a data collection plan influenced by religious affiliation then it is important to ask
this question.
The output of this activity is a data collection plan
• Thinking about the focus of your project, what other
that specifies how data will be collected (from whom,
information will help you understand the experiences of the
by whom, how and when).
people who provide data? For example, if you aim to
This activity builds on Activity 1.3, in which you identified the support older clients to better manage their diabetes, you
data that is already available for use and the data you will need to might find out (via survey or through medical records) if
collect. In this activity you take into account the resources and they have seen a diabetes educator or podiatrist, and you
time you have, and make a concrete plan for sourcing and might also find out about their medications and their most
collecting the data. See Box 5 (next page) for an example of a recent glycated haemoglobin results (see Box 8 for
data collection plan. examples).
In most cases, data about health literacy will be collected via survey
using the HLQ. Demographic data can be collected using the same
survey. Health status and service use data can be collected in a
The most critical type of data to collect at this stage is
number of ways e.g. survey, interview, medical records or
data that can tell you more about the nature of the
administrative datasets.
problem and help you understand your target group –
Consider the following as you undertake this activity: data about:
• How many people should HLQ data be collected from? 1 the health literacy strengths and challenges
A recommendation is between 50 and 100 so you can be of your target group, and
confident about what the survey data is telling you. If you are 2 barriers and facilitators to their access or use of
collecting data from several groups and want to look at each group services.
individually, you will need 50-100 in each group.
3 Facts about the target group’s health service use and
• How will you ensure you collect data from/ about a health status
representative sample of your target group? People who are
easy to recruit to surveys or interviews are often people who This data will help your stakeholders come up with
can also easily access information and supports. Your data appropriate solutions to the problem you are tackling.
collection strategy must consider methods for including
people in your target group who are harder to reach (see
Box 6 for suggested strategies).
• It is recommended that HLQ data be supplemented
by interviewing a small number of survey participants (e.g. Eligibility criteria It may be that not all clients in
10% of the sample) to provide further context to the needs your target group are suitable to collect data from.
assessment. An interview example is shown in ‘Ophelia For example, it may not be appropriate to collect data
Templates and Additional Resources’. from clients who are cognitively impaired, or from
• What demographic, social or lifestyle information will you people with health conditions that preclude them from
need to help you understand the characteristics participating.
of those who provided data? There are standard
demographic and social questions you can use (see Box 7), Be specific with inclusion or exclusion criteria at the
but do consider if additional information is required, given planning stage to minimise confusion about data
your target group and project focus. For example, if you are collection.
Ophelia Manual Step 2 PAGE 17BOX 5 / Example of data collection plans
Example 1: Example 2:
Time frame: August and September Time frame: February to March
Staff: Project officer Staff: Clinical and administrative staff
Source from clients: Survey 50 local Aboriginal Source from clients: Survey 100 young adults with asthma
and Torres Strait Islander women. Recruit women initially attending an outpatient respiratory clinic. Invite all eligible
through the Aboriginal Health Service and use a snowball clients to participate in a survey through SMS and email,
recruitment approach to access women not attending the and via direct invitation when clients attend the clinic.
service.
Data collection via survey:
Data collection via survey: • Health Literacy Questionnaire (HLQ)
• Health Literacy Questionnaire (HLQ) • 3 questions about barriers and facilitators
• 3 questions about pap screening experiences to the use of asthma action plan
• Standard socio-demographic data and a question about • Standard socio-demographic questions
cancer history and a question about family situation/ context
Interview data: Interview data:
• Interview 6 survey participants with varying • Interview 10 survey participants with varying
HLQ scores about how they engage with health HLQ scores about how they engage with health
professionals or find information in relation professionals or find information in relation
to engaging with pap screening to managing acute exacerbations of asthma.
Source from the health service’s medical records, clinical Source from the health service’s medical records, clinical
data and service use data. data and service use data.
Data to source: Data to source:
• Number of pap screens • Number of unplanned admissions for acute
• Diagnosed health conditions exacerbation of asthma
• Audit of asthma action plans currently
in use by the health service
Ophelia Manual Step 2 PAGE 18BOX 6 / Recruitment strategies to increase BOX 7 / Standard demographic, social
representativeness of the sample (and make and health-related lifestyle questions
sure the hard-to-reach groups are included)
• Age (in years or categories)
• Invite every client from your target group who • Sex or gender
attends your service on a certain day of the week for
• Country of birth
several weeks.
• Main language spoken at home
• Invite the next 50 clients attending the service who
are from your target group. • Living alone or with others
• For small services, recruit as many as possible from • Education (years or highest level of education
your target group instead of aiming for a attained)
representative sample. • Employment status
• Private health insurance
To include hard-to-reach groups:
• Health behaviours related to project focus such as
• Consider using a snowballing strategy, whereby
smoking or physical activity
people who are already in a study refer others that
they know to the researchers/ study coordinators. • Self-rated health
Other useful strategies include using community • Medications
leaders or peers within a particular group to act as
• Number and type of health conditions
direct recruiters.
• Use existing community organisations wherever
possible. Consider using local media such as
community radio, particularly for ethnic groups.
• Other methods of collecting data from hard-to- BOX 8 / Examples of clinical or service use data:
reach groups include being aware of where and at
• Referral processes within or between services
what time these groups may gather.
For example, at particular clinics, • Number and type of services or programs available
or at food markets, or cultural festivals. to people from the target group
• Ensure that people who are recruiting participants • Proportion of people in the target group with
don’t make assumptions about disadvantaged a chronic disease
groups’ ability or interest • Service attendance (e.g. rates of attendance at ED
to be involved in data collection. among the target group over the past 12 months).
See Figure 1, Step 3 for more ideas.
Ophelia Manual Step 2 PAGE 19Using the Health Literacy Questionnaire (HLQ) – frequently
asked questions The HLQ is available in a range of languages.
For an up to date list email ghe-licences@swin.edu.au
What is the HLQ?
The Health Literacy Questionnaire (HLQ)
is a multi-dimensional tool that measures
nine domains of health literacy.
How many items does the HLQ have and how long does it Tips for administering the HLQ
take to complete?
The HLQ consists of 44 questions. Completion time varies The HLQ can be administered orally (someone reading
depending on the skills and approach of the person the questions out loud), over the phone,
answering. It usually takes between 7 and 20 minutes to in person, in paper form, or online.
complete by oneself. When orally administered by telephone • The option of oral administration should always be
or in person, the HLQ takes between 15 and 30 minutes to offered as a choice, but should be done sensitively
complete. so as not to embarrass people who may have low
How is the HLQ administered? literacy.
The HLQ can be either self-administered or verbally • Say something like “You may have left your glasses
administered. It is available in paper and online formats. at home today – I can read it to you
if you like”, or “Many people prefer to have these
Is the HLQ a valid and reliable tool? sorts of things read aloud to them –
Modern and rigorous psychometric tests have shown
I can do that if you’d like”.
the HLQ is a robust measure of nine identified health literacy
dimensions. It has excellent psychometric properties,
construct validity, reliability, and is shown to provide unbiased
mean estimates of group differences.
What information will the HLQ provide?
The HLQ has been designed to provide practitioners,
organisations and governments with data that describes the
health literacy strengths and challenges of individuals and Download Ophelia HLQ registration
populations. page
How will information from the HLQ assist us to plan our
project?
The data collected using the HLQ allows development and
selection of fit-for-purpose response strategies that optimise
opportunities to improve equity in health outcomes and
access.
Ophelia Manual Step 2 PAGE 20Activity 2.2
Obtain ethical and other required approvals
The outputs of this activity are the approvals
that you require to conduct your data collection
and consultation activities.
Do you need ethics approval? When recruiting participants:
• Consider the nature of the relationship you
Ethical approval may be required if you are undertaking
have with the client. Is it appropriate for you
the Ophelia approach as a research study or if you are
to recruit the client or would it be better for
planning to publish the findings.
a colleague to do it?
For any quality improvement activity, it is advisable to • If the person raises two or more potential problems
discuss the need for ethics approval with your with participation, you should
organisation’s ethics advisor even if you are not be alert to the possibility they may not
planning to publish your results. want to participate.
• Be careful not to oversell the individual benefits.
Sometimes, implied consent can be used. For example,
a short statement on the front of a survey about what
the results will be used for may be sufficient. You should
still discuss this option with your organisation’s ethics
advisor (this may be an ethics committee chairperson,
or the manager of your service).
If a consent form is required:
• Signing forms can be distressing for some. People
with low literacy or from some cultural groups may
be particularly affected by this.
Consider the following as you undertake this activity: If this is likely to be a concern for your population
• Are the people you recruit likely to feel insecure or then seek ethics approval
distressed by anything you intend to ask them? to use a verbal consent strategy.
• How can you ensure that participants are protected from • The consent form should clearly state that a
pressure to participate or respond in particular ways, given decision not to participate will not affect any
an existing client-provider relationship? of the services that the client receives or their
relationship with their service provider. This should
• How can you ensure people feel safe about deciding not to
be strongly reinforced by the person who discusses
participate, can easily opt out, and can easily withdraw if
the project with the client.
they initially agree to take part?
• How can you provide enough information to potential
participants to allow them to give informed consent, but not
burden them with too much detail and reading?
Ophelia Manual Step 2 PAGE 21Activity 2.3
Collect and / or extract data
The outputs of this activity are the data you will examine and
present to stakeholders for discussion.
Consider the following as you undertake this activity: • How are you going to record the data? Will you use
• What training do the staff or volunteers who are collecting an Excel spreadsheet or will data be entered directly online
survey or interview data require? Staff must be skilled in (e.g. via online survey)? What processes have you set up for
engaging potential participants in a way that creates a sense paper-based surveys
of safety. Participants need to be invited to participate to be returned to a central point for data entry?
without being pressured to do so. Staff should also • Who will enter the data? What strategies will
understand if and when to prompt and when to stick you use to check that data entry is correct?
exactly to a script. • If interviewing, will these interviews be recorded
• What quality control strategies do you need to put into and transcribed?
place before you start collecting data? If using several data
collectors, how will you ensure that data is collected in the
same way by everyone throughout the entire data collection Data collection
period?
Survey or interview data from individuals
• What methods will you use to collect data? These will have
can be collected in a variety of settings:
been specified in your data collection plan, but may require
• At the clinic or hospital
modifying if you find that collection is not going according
• At home
to plan.
• In the community (for example, community health
• For example, you may find that the people you are centres, citizens’ groups, community organisations)
collecting data from are not representative of your target
group because particular groups of people Survey or interview data from individuals
are not participating. You may decide to change can be collected by a variety of people
from direct recruitment to snowballing methods (as long as they have received training):
of recruitment, or you may decide to collect data • Clinicians
from other settings. • Care workers
• If you do modify your methods, and have ethics approval • Volunteers
for your project, you will need to let your ethics committee • Administration staff
know about these changes.
Survey or interview data from individuals
• What strategies do you have in place to monitor how data can be collected using a variety of methods:
collection is going and to adress issues that are raised? Is it • Online surveys
taking staff or volunteers more time to collect data than • Via mail out (postal surveys)
anticipated? Do you need a strategy for staff and volunteers • Face to face
to debrief during the data collection period? • Over the telephone
• In group settings
Ophelia Manual Step 2 PAGE 22Activity 2.4
Prepare materials for the consultation activities How to score the HLQ and present the results
The output of this activity is a report on the needs The HLQ provides nine separate scores, one for each of the
assessment, which can be used to support the 9 scales (scale scores). The scale scores highlight health literacy strengths and
consultation activities in Step 3. challenges of respondents. When examined together, the nine scale scores
show the health literacy profile of an
Consider the following as you undertake this individual or group (refer to ‘Ophelia Templates and Additional Resources’
activity: for more detail).
• How can you use the findings from the data
collection to better understand the health Average scale scores provide useful insights into the health
literacy needs and strengths of your client literacy strengths and limitations of population groups. This
group or community? is where demographic, health outcomes and service use data can
be useful. For example, you may want to know the average scores
• What type of data do you have and
for each of the nine scales for men, or for people with diabetes,
how can this data be integrated and
or for people who are frequent service users.
presented in a way that is meaningful
to your stakeholders? An Excel spreadsheet and SPSS syntax is supplied with the
• What information did you collect about the HLQ to assist with the calculation of scale scores. A simple
way in which people access, understand, way to present the results of the HLQ is to report the means
appraise and use health information and (and standard deviations) for each scale in a bar graph or table.
services in relation
to the project focus? This data might include HLQ scale scores for overall sample (n=813)
HLQ results and interview findings. How 5
can these data be presented?
Scale range 1-5
• What demographic, service use and health 4
Scale range 1-4
outcomes data did you collect? How can you 3
present this in a way that describes your
overall sample? Can you use this data 2
alongside the health literacy data? 1
• Are there any unexpected or unusual
HCP support
information
managing...
support
Appraisal
engage with...
health...
Find health...
health...
Sufficient
Actively
Social
Actively
Navigate
Understand
findings? Do these need further exploration
to understand them better?
Ophelia Manual Step 2 PAGE 23Preparing HLQ profiles to present during consultation activities
When using the HLQ to plan interventions, it is important to Presenting these sub-groups during consultation activities
note that not everyone who participated in the survey will have allows stakeholders to identify interventions for groups of
the same strengths and challenges. people with particular needs.
Cluster analysis is recommended to identify A detailed guide to undertaking cluster analysis, interpreting
sub-groups of individuals who have similar patterns the results, and preparing a brief report
of HLQ scores; that is, similar ‘profiles’ of health literacy is available in‘Ophelia Templates and Additional Resources’.
strengths and challenges. Cluster analysis produces a table like
the one shown below.
Example of health literacy profiles of a group of clients (using cluster analysis)
Possible score range 1-4 Possible score range 1-5
% of 1. 2. 3. 4. 5. 6. 7. 8. 9. Understand
sample Feeling Having Actively Social support Appraisal of Ability to Navigating Ability to find health
in each cluster understood sufficient managing my for health health actively the healthcare good health information
and information health information engage with system information well enough
supported by to manage healthcare to know what
healthcare health providers to do
providers
24% 3.68 3.45 3.40 3.50 3.16 4.55 4.40 4.26 4.46
30% 3.35 2.91 3.08 3.12 2.84 3.74 3.47 2.96 2.83
30% 2.72 2.49 2.74 2.54 2.43 3.44 3.32 3.31 3.71
16% 2.83 2.39 2.70 2.68 2.23 2.38 2.19 1.94 2.24
Ophelia Manual Step 2 PAGE 24Preparing vignettes to accompany HLQ profiles for Example vignette
consultation activities
Sarah is a 60 year old married woman who retired 10
Just presenting cluster analysis tables to your years ago due to ill health. She has no children and her
stakeholders during consultation can be a little dry and relationship with her husband is strained.
many people find it difficult to imagine the people
behind the numbers. Sarah has depression and anxiety, is obese (BMI 38),
and has type 2 diabetes and peripheral vascular disease.
Presenting case studies (or vignettes) alongside the table Recently she commenced insulin due to difficulties
helps bring the profiles to life for people. controlling her HbA1c.
An example of a vignette is shown right . A vignette is a Sarah trusts the advice her doctor provides her, but feels
brief description of a fictional person who might be typical that he judges her. He consistently tells her to lose weight
of a group of people within your sample. and quit smoking but she doesn’t feel it is possible for
her to quit, exercise more or change her diet given her
Interview data from participants in your study can assist health conditions, her depression and her financial
you to write the vignettes. Usually, four to six vignettes situation. She expects her health will continue to decline
are useful to describe a sample. and doesn’t believe there is anything that she can do to
alter this.
Additional example vignettes can be found in ‘Ophelia
Templates and Additional Resources’.
Ophelia Manual Step 2 PAGE 25Step 2 / Tips and key considerations
Who else can help with data collection? What if you didn’t use the HLQ to collect health literacy data?
Are there other people who can help with data collection, It may not alway be possible or culturally appropriate for your
such as volunteers, or staff from other departments? organisation or community to use a questionnaire such as the
The HLQ requires a short training session before HLQ.
administration – an online video is availabe to help
Instead, you may have decided to collect health literacy
with this. See Ophelia YouTube channel.
information using interviews or focus groups, and to use the
The data collection phase can be the most intensive. However, vignettes.
it is central to ensuring that subsequent work accurately
Even if this is the case, it is still important that you collect as
reflects the needs of your clients
much relevant and contextual data as possible. For example,
or community.
what are the broad demographic characteristics of your local
community or client group; is there service-level data about
health behaviours?
If clients need help to complete a questionnaire, offer them a
choice about who will help them: a family member or friend;
someone they already know at the service; or someone separate
from their care.
Do you have to write your own vignettes?
HLQ and other demographic data can be collected to tell you
about the health literacy needs of your target group. These
data can be matched to existing generic vignettes which can
then be tailored to suit your local context and your client or
community group.
Ophelia Manual Step 2 PAGE 26The Ophelia Templates and Additional Resources guide contains resources to support application
Ophelia of the Ophelia process.
Templates The templates and resources are designed for use at all stages of project planning,
and Additional implementation and evaluation.
Resources
Templates and resources to support In addition to templates for each activity described in Step 2, the Ophelia Templates and
application of the Ophelia Manual
Additional Resources guide contains the following resources and tools to help
you complete Step 2:
• Activity 2.1 How many people to collect data from?
• Activity 2.2: Example of invitation letter for clients or community members in plain
language.
• Activity 2.2: Example of wording used in participant information sheet – for ethics
application for data collection using the HLQ.
• Activity 2.3 Training for staff in data collection using the HLQ
(see Ophelia YouTube channel).
• Activity 2.3: Sample script for recruitment.
• Activity 2.4: Prepare materials for the consultation activities (scoring the HLQ,
using cluster analysis, creating vignettes, interviews to support vignette writing).
• Activity 2.4: Template for interviews to support vignette writing.
• Activity 2.4: How to present HLQ results.
• Activity 2.4: Using cluster analysis to identify fine-grained health literacy profiles.
• Activity 2.4: Creating ‘vignettes’ using HLQ data.
Ophelia Manual Step 2 PAGE 27Step 3: Consultation to identify new
S3 ideas
Phase 1
The purpose of Step 3 is to identify effective local practices
and innovative intervention ideas. From the pool of ideas generated
during this step, one intervention (or a suite of interventions) can
be selected for delivery in the next stages of the Ophelia approach.
Step 3 of the Ophelia approach involves four activities that seek stakeholders who are immersed
to generate a pool of intervention ideas relating to the issue/s the in the issues through the presentation of data collected (and
project is trying to solve. These ideas are provided by local sourced) during Step 2.
Step 3: Purpose: To identify effective local Time frame: 1 month
Consultation to identify new ideas practices and innovative
intervention ideas.
Activities:
3.1 Establish a consultation plan
3.2 Make arrangements required for the consultation activities
3.3 Undertake the consultation activities
3.4 Prepare a brief summary of the results of the consultation activities
Ophelia Manual Step 3 PAGE 28Why do Step 3 of the Ophelia process?
Provides experienced clinicians, community
workers and community members with permission
to innovate. This empowers and engages the people
who will develop and deliver the intervention,
which contributes
to the desire for it to succeed.
Engages key stakeholders in generating ideas.
Interventions are more likely to be fit-for-purpose
when they are developed by people who really
know the context, client group and the community.
Leads to interventions that are more likely
to be equitable because they are developed by
people who know which groups in a community
are struggling to access services and may be
missing out on care.
Ophelia Manual Step 3 PAGE 29Figure 1 presents ways in which health literacy limitations can be barriers to different stages of
accessing and engaging with health services. Often, the people most at risk are those who drop out in
the earlier stages (i.e. the upper levels of Figure 1), resulting in fewer and fewer people reaching the
stage of fully engaging with providers and healthcare.
Figure 1: The points at which health literacy can affect a person’s access with healthcare services
People engage with Examples of health literacy barriers Potential impact
healthcare services by... at each point of access or engagement of these barriers
Approaching a health service • Little knowledge about the services People don’t access
that are available to them the service
• Lack of confidence in approaching a service
Receiving a service • Limited knowledge of how the service works Large numbers of clients
• Difficulty explaining needs to intake workers or particular demographic
groups ‘do not attend’
Finding that the • Services don’t tailor what they do to individual patients’ Clients drop out;
service is responsive learning needs outcomes not achieved
to their needs • Clients feel unable to ask questions of providers
Fully engaging with • Providers unaware that clients are unable to put Fail to establish rapport or
providers / fully knowledge into practice – may lead to frustration and lack fully participate in own
understanding own of trust care
health needs
Ophelia Manual Step 3 PAGE 30You can also read
