Introduction
The patient or consumer voice in healthcare has evolved from an aspiration to becoming
an expectation, which in some developed countries is respected by inclusion in nationally
auditable standards (Australian Commission on Safety and Quality in HealthCare.1 2
Inclusive and appropriate research about patient perspectives requires skills and
resources to ensure that sound quality assurance processes are designed, delivered
and evaluated. Understanding the characteristics of the population is key to ensuring
appropriate representation of consumers in person-centred or patient involvement research
methods. Vulnerable patients, those with ongoing health and literacy challenges, can
benefit from advocacy, and often are not used to being valued in terms of their own
views, lacking empowerment to present their own opinions. Additionally, traditional
methods need to be used more sensitively to ensure that these consumers can be included
and participate equitably in the quality assurance process.
Meaningful person-centred engagement is occurring more often in healthcare settings
through the process of codesign. Originating from design science, codesign is defined
as the engagement of patients and other consumers, to capture their experiences in
the design or redesign, of healthcare services and is a central concept of health
improvement initiatives.3 Codesign includes core principles of equity, understanding
of experience and service improvement and provides an avenue for person-centred participation,
recognising that consumer experience and knowledge is increasingly being considered
important to complement professional knowledge.4 Direct engagement of patients and
other consumers in research and health service improvement activities requires careful
methodological planning around desirability and feasibility and the practical implications
for the involvement of patients and consumer as participants.5
The following examples of person-centred research methods enable the authentic voice
of individuals who experience health challenges to be collected. The five approaches
provide opportunities for the voice of consumers to be heard. Each of the methods
can be used to emphasise active participation by consumers in the design, delivery
and evaluation of health services safety and quality systems.
Methods
A review of person-centred research methods in the literature was undertaken to scope
for current techniques to ensure currency of the information. Patients or consumers
were not involved in this review of methods as the focus was on different strategies,
rather than recruitment of participants in any study.
The search strategy employed a pragmatic approach6 as it allowed the research methods
to be the focus. The authors initially searched individually for articles using multiple
databases including CINAHL, MedLine and Scopus. Articles that described person-centred
strategies for the methods within their area of expertise were sought. A further search
using references of articles and updates over the time period of development of the
manuscript was also undertaken. The research group met monthly over a 12-month period
to discuss the research methods, literature and develop the article. The authors included
research that specifically related to methods deployed for researching person-centred
issues, rather than reports of findings from consumer involvement in research studies.
Interviews
Interviews can be used to gather information as part of qualitative and quantitative
data collection for research, education or quality assurance purposes. Understanding
the characteristics of the group of interest, identifying potential issues with recruitment,
ethical concerns such as consent, privacy and confidentiality need to be addressed.
The development of the interview schedule usually depends on the methodology. For
example, semistructured questions with prompts may be more valuable for encouraging
narratives, whereas a more structured schedule could promote eliciting specific information
from participants. A previous study7 used face-to-face interviews to engage with immigrant
patients and ascertain factors influencing their ability to trust healthcare providers.
The findings outlined the complexity in developing rapport and creating trust in intercultural
healthcare, a valuable outcome for improving person-centred care and overall quality
in healthcare. Additionally, Sandvik and McCormack5 highlighted the importance of
deploying a person-centred framework that promoted mutuality of understanding between
the researcher and interviewee.5
Skill in interviewing relies on the interviewer being able to prompt and elicit required
information in partnership with participants without creating bias or leading the
voice of the participant’s opinions, experiences or descriptive accounts. Initially,
it is important to develop rapport and ensure the participant understands the purpose
of the data collection and willingly consents. The setting of this type of interview
may also alter the patient–researcher relationship. Conducting an interview in the
patient’s home may differ from being carried out in healthcare environments and should
be considered when planning. It is also important to ensure that the participant knows
there are no right or wrong answers.
Studies have shown telephone or digital technology can be as effective as face-to-face
interviews.8–10 However, other considerations are needed when telephone interviews
are selected as a cost-effective method of data collection. As visual cues are lacking,
it is important that patients can hear adequately, that there are no distractions
and that there is an understanding of what the interviewer is asking. The participant
may divulge information such as using a hearing aid or hands-free telephone that could
be useful for ensuring a successful interview. Preparation is important for both parties
including confidence in using the technology for interviewing or providing assistance
to the participant. A previous study comparing the use of telephone and face-to-face
interviews found that there were some advantages to the telephone method.9 The authors
suggest that participants who agree to be interviewed about sensitive topics may prefer
the anonymity; it is easier to reach a wider participant group and that interviewer
and participant safety is more easily controlled.
Following completion of an interview, it is important to ask the participant whether
they would like to add any other information. This opportunity may be where participants
provide vital information in their own words without the constraints of scheduled
questions. Similarly, asking participants whether they would like to be sent a copy
of the transcript, so they can verify the discussion during the interview is important
if the participant has difficulty with expression or other comorbidities, such as
deafness or poor digital voice connection that may have hindered understanding during
the interview.
Focus groups
Focus groups use group discussions, facilitated in a specific manner to gather informal
information on a selected topic. In healthcare, focus groups can assist in generating
a rich understanding of consumer experiences, beliefs and values, and developing strategic
goals aligned with these outcomes. While one-on-one interviews can be suitable to
obtain a measure of personal feelings and opinions, which can be beneficial for eliciting
the opinions of minority groups, focus groups may be useful for obtaining opinions
that are likely to reflect the majority.11 Codesign using focus groups is an opportunity
for patients and other consumers to consider and discuss their experiences within
healthcare systems and services in a collaborative, participatory setting.4 Theis
et al
12 held focus groups to determine what factors were important to patients during their
healthcare journey. This information was then utilised to develop ‘report cards’ as
a strategy for consumer choice in healthcare, commonly used in the USA to compare
providers and health plans as well as incentivise quality improvement.12
The size of a focus group can determine the progression of discussions and, although
sometimes difficult and unpredictable, ensuring optimum number of participants can
assist with achieving the desired outcomes. Six to eight people per group are generally
recommended, however, focus groups can work with as little as 3 or up to 14 participants.13
To encourage respectful and active conversations among all participants, the moderation
of focus groups requires a complex set of skills. The moderator needs to be able to
guide the discussions without introducing bias such as leading the group or unconsciously
providing positive or negative cues. They need to be able to encourage a relaxed and
comfortable space for participants to engage.
The composition of focus groups plays an important role in determining the data that
will be gained from the discussions. For example, purposive sampling, considering
the socioeconomic status of potential participants, has been shown to be beneficial
in focus groups with chronically ill participants where it was demonstrated that societal
norms are flexible and can be challenged and reformulated during focus group discussions.14
However, forming a representative focus group does not ensure participants will be
equally represented in discussion. Participants with higher education, health literacy
and better knowledge of health systems have the potential to dominate conversations
because they are better equipped to do so. Individuals participating in focus groups
of this nature often construct their ‘patient view’ by establishing themselves as
knowledgeable, or by validating or challenging another’s claims, depending on the
dynamics of the group.15
A further limitation that can hinder focus group participation is poor moderation.
Tausch and Menold16 describe inadequate moderation as a major barrier to successful
focus group discussion for a variety of reasons including poor group dynamic, inability
to use various communication methods, concentrated attention and poor preparation.
There has been recent interest in the use of online focus groups17 which due to the
COVID-19 and social distancing measures may become more accepted by groups who could
be impacted by potential exposure to pathogens by leaving home. Additionally, consumers
who are less mobile, lack transport or have difficulty attending a face to face focus
group could join remotely to participate in data collection processes. Conversely,
the use of online focus groups may also preclude citizens who do not have access,
or know how to use digital technology. Additionally, some people with specific health
challenges such as hearing loss may not be able to fully participate or prefer to
use a traditional face to face approach where visual cues are more easily interpreted.
Citizen juries
A citizen jury is a participatory action research method that draws on the symbolism
of a jury trial.18 It is a deliberative and inclusive approach for community engagement
that is increasingly being used to gain understanding about issues of health concern
and policy. Key tenets of citizen juries are inclusivity, deliberation and active
citizenship.19 It is these features that indicate citizen juries can allow representation
and give a voice to those who might normally be less visible.
In a citizen jury, evidence and opinions of experts are presented to a representative
group (jury) who then deliberate to reach an outcome—for example, a consensus or priority
list.18 Citizen juries are based on the notion that any person, given the opportunity,
time, support and resources is capable of decision making about complex technical,
health, scientific and ethical issues,20 21 including diverse subjects such as population
ethical issues; resource allocation; health policy; environmental health and community
well-being.19 Citizens’ juries acknowledge representation is not just for the very
literate and advantaged, but is, by intent, inclusive of people who experience wide-ranging
disadvantage and inequity. The approach provides a presence or ‘voice’ of marginalised
or minority groups so that their interests and perspectives are included.22
The process is overseen by a steering committee to guide question development, evidence
presentation, oversight, stakeholder engagement and dissemination or implementation.21
Recruitment occurs by word of mouth; via community or government organisations; electoral
role or random digit dialling or more deliberative.19 Jury size may be 12–24 citizens
who meet for a period of time, usually between 1 and 5 days19 to ‘hear, question,
challenge and clarify expert witness testimony from a range of perspectives’.20 In
healthcare, expert witnesses may include clinicians, policy-makers and health consumers
who provide testimony about their personal experience of the aspect of healthcare
under deliberation.20
A study23 involved a citizen jury to assess health needs in an area with high levels
of social deprivation and social exclusion, including poverty; poor housing; high
levels of death, illness and disability; alcohol and drug abuse; poor access to health
services and low literacy. Rejecting traditional methods of jury selection, recruitment
occurred by way of talking to people at post offices, supermarkets, outside schools
and at bus stops to ensure a diverse group reflecting the needs and interests of the
community. This example of citizen juries shows how, with careful planning regarding
recruitment and support during the period of participation, the method can be inclusive
of some of the most marginalised in communities.
Photo elicitation
Photo elicitation interview (PEI) refers to the use of photographs to trigger dialogue
in the context of research interview.24 In PEI, interview is stimulated and guided
by images. These images can be chosen from archives or magazines, or created by the
researcher or the participant. When photographs are taken by the participant, the
method is referred to as native, reflexive or autodriven PEI.25 Autodriven PEI shifts
the balance of control over generation of data from the researcher to the participant.
The increased control autodriven PEI gives participants makes it a person-centred
data collection method.26
Images change the focus and energy of conversation27 and can lead to information and
understandings that traditional oral interviews may not. Language processing uses
different areas of the brain compared with processing visual information, so the use
of image-based research methods enables ways of creatively expressing thoughts, concepts
and experiences. In doing so the methods can present a different way of telling as
well as a different way of knowing.27 Participatory interview activities can be more
engaging and can facilitate a more relaxed atmosphere, reduces the power imbalance
that can exist between participant and researcher.
This participatory method is an effective way of achieving partnerships with patients
and consumers within health services28 and provides a way for inclusion of those less
visible and lacking representation. This was demonstrated in a study29 where children
took photos to explain things that were important to them, thereby facilitating children’s
control over the data.
When photos taken by patients form part of the data there are specific ethical considerations
as participants are more visible, including, but not limited to, their physical appearance
and representation. Details of their lives are revealed making them much more identifiable
than they might be in traditional research.30 Robust approaches and clear guidance
are required about the taking of and use of photographs and specific consent obtained
around the use of images in papers, conferences and other forms of dissemination.29
Video-reflexive ethnography
Video-reflexive ethnography (VRE) is a participatory research method that regards
consumer and clinician participants as experts and encourages their involvement in
the research process.31 VRE studies tend to start with participant observation and
interviews32 to build relationships with participants. The method involves video recording
episodes of clinical care, conducted in healthcare settings in real time, known as
video ethnography and showing these video recordings back to participants, known as
video-reflexivity to elicit their responses and collectively identify practice change.33
VRE is a strength-based method and is about opening up or exnovating healthcare and
recognising what works well in practice.29 Exnovation is more than visualising a clinical
episode of care, as its impact is evident in the video-reflexive sessions where clinical
care is made explicit.31 Wyer et al
34 used VRE to explore how patients nursed in isolation identify infection risks.
Wyer et al showed the patient a video recording of an episode of their care, and the
video recording produced of the video-reflexive session was then shown to clinicians.
Video-reflexivity can act as a catalyst as clinicians become privy to how the patient
experienced their care, triggering clinicians to identify strategies to change their
practice to improve health service provision. This type of active patient involvement
is vital for ensuring quality, person-centred healthcare initiatives.
Discussion
Australian Standards suggest that health service organisations must develop, implement
and maintain systems to partner with consumers.2 Capturing the consumer voice and
experience is an important part of quality assurance across many facets of healthcare.
The five methods described highlight a variety of useful tools for engagement with
individuals who experience health challenges. The research method chosen to involve
and represent consumers depends on the type of data that is necessary to guide maintenance
of safety and quality assurance processes. Collaborative management, including patient
involvement in design, delivery and evaluation of health services has been shown to
drive quality improvement as well as improve health economics and satisfy the legal
and moral rights to person-centred care and autonomy in health.35
Patients need to know they are a valuable part of the healthcare team and that their
experiences matter. Person-centred research methodologies capture the patient. Interview
methods such as semistructured interviews or the use of interview charts are supported
for participants with health challenges as they can be a flexible and personal way
of eliciting information for validation or as an experiential account. Similarly,
focus groups can provide a level of social cohesiveness and support while building
relationships with participants to allow them to share their experiences. The use
of citizen juries has capacity to involve the wider community in decision-making,
regardless of their status, while PEI and VRE methods provide alternative participatory
approaches enabling improved communication in healthcare.
Conclusions
Patient or consumer involvement can take multiple forms in healthcare and there is
no single strategy that can be considered to reflect best practice. Improving the
health status and promoting the quality of life for individuals with ongoing health
challenges necessitates cultural change at an individual, organisation and systems
level. Incorporating a variety of person-centred approaches in routine quality assurance
activities provides a means of capturing the experiences of representative consumer
groups for the benefit of all stakeholders to ensure high safety and quality in healthcare
is maintained.