Doctor, Nurse or Apomediary?
What Role should Healthcare Professionals Play in Assisting Patients with Long
Term Conditions to Access, and Make Sense of, Information from the Internet
Jaqui Hewitt-Taylor and Carol S. Bond
Institute of Health and Community Studies, Bournemouth University, Christchurch Rd, Bournemouth, U.K.
Keywords: Apomediary, Intermediary, Long Term Conditions.
Abstract: This position paper explores healthcare professionals’ roles in mediating the information that people with
long term conditions obtain via the Internet. It explores how the way in which long term conditions are
conceptualised may influence the roles and approaches which healthcare staff should adopt, and contrasts
the intermediary and apomediary roles which this may include, and how such roles may be enacted in
healthcare provision.
1 INTRODUCTION
This position paper explores the role changes that
healthcare professionals may need to consider in
relation to the information that patients with long-
term conditions can now gather via the Internet. It
suggests that the roles which it is seen as appropriate
for healthcare professionals take on should be
guided by how long term conditions are
conceptualised, as this will determine where
responsibility for condition management lies. These
roles should also be informed by consideration of
whether apomediatory or intermediatory approaches
are appropriate.
2 BACKGROUND
Historically, expertise in the causes of ill health,
diagnosis of disease, it’s treatment and management,
has rested with healthcare professionals. However,
over recent years there has been a move towards
partnership in care, and recognition of the
knowledge and expertise which patients have and
can contribute to the management of, and decision
making about, their health (Department of Health
[DoH], 2001); (Schwartz et al., 2006). There are a
number of reasons for this shift, but a significant
factor is the increasing volume of information about
health related issues that is available to the public
via the Internet (Diaz et al., 2002); (Schwartz et al.,
2006); (De Boer et al., 2007); (Iverson et al., 2008),
(Kommalage, 2009). Patients are increasingly likely
to use the Internet to access health related textbooks,
journals, reports, conference proceedings, the
websites of individuals and organisations, social
networking sites, blogs, and support and special
interest groups, before, after, or as an alternative to,
consultations with healthcare staff. The likely result
of this is that consultations between patients and
healthcare professionals may increasingly be
expected to include discussions of the information
which patients have accessed, it's quality, and
perceived value, as well as their direct health care
needs (Diaz et al., 2002). This paper therefore
discusses the positions which might be taken in
relation to the question: What role should healthcare
professionals play in assisting patients to access and
make sense of information from the Internet?
3 CHANGING EXPERT
PATIENTS
The move to patients being seen as partners in care
has been accompanied by the development of the
concept of expert patients, wherein healthcare
providers and patients share and value one another’s
knowledge, expertise, and experience (DoH, 2001).
However, this has tended to assume that healthcare
139
Hewitt-Taylor J. and Bond C..
Doctor, Nurse or Apomediary? - What Role should Healthcare Professionals Play in Assisting Patients with Long Term Conditions to Access, and Make
Sense of, Information from the Internet.
DOI: 10.5220/0004184701390143
In Proceedings of the International Conference on Health Informatics (HEALTHINF-2013), pages 139-143
ISBN: 978-989-8565-37-2
Copyright
c
2013 SCITEPRESS (Science and Technology Publications, Lda.)
staff contribute expertise in anatomy, physiology,
disease processes, it's treatment and management,
and patients contribute knowledge of how certain
regimes or interventions work for them, given their
priorities, values, and lifestyle choices (DoH, 2001);
(Coulter, 2002); (Badcott, 2005). The expanding
availability of information that patients can access
via the Internet, including probable diagnoses,
investigations, treatment options, disease processes
and trajectories, as well as more social aspects of the
effects of health issues, may create a new type of
expert patient, who has expertise that has previously
been located within the domain of healthcare staff.
Whilst doubts have been expressed over whether
patients could attain expertise in the theory behind
disease processes and management (Badcott, 2005),
it has also been suggested that people who live with
long term conditions sometimes attain greater
medical or technical knowledge of their condition
than some healthcare staff (Kirk et al., 2005);
(Hewitt-Taylor, 2007). This may be particularly true
where patients can access, appraise, and debate
evidence from a wide variety of Internet sources.
Whilst this ability to access a range of health
related information and evidence can be beneficial,
it also presents challenges for all concerned (Iverson
et al., 2008). How the benefits of the range of
information available on the Internet can be
maximised, the challenges managed, and the roles
and responsibilities of healthcare staff within this
process merits some thought. This may be
particularly pertinent to people who have a long-
term condition, and who may be more likely than
others to access and seek to discuss information
about their condition that they have gleaned online.
4 THE PROS AND CONS OF THE
AVAILABILITY OF
INFORMATION
Patients having increased access to health related
information means that they can confirm and
augment information given to them by healthcare
staff, gain a more in depth understanding of their
condition, and use this to enhance their decision
making and personal choices (Salo et al., 2004);
(Iverson et al., 2008). In terms of peer advice and
sharing experiences, Internet based support groups,
discussion forums and social networking sites can
provide a useful milieu in which the implications of
individual's decisions can be tested with peers, and
lifestyle issues considered with input from others
who have to manage similar situations (Carter et al.,
2007); (Iverson et al., 2008). Such sites can also be
used to signpost peers to sources of information and
advice, and give suggestions regarding their quality.
Increased access to information also has the
potential to enhance discussions between healthcare
providers and their patients, so that ideas,
hypotheses, and research findings can be explored
and debated, fact can be distinguished from opinion
or hope, and each party gain a greater understanding
of the other's perspectives on diagnosis, treatment,
and interventions. This can enhance decision
making, and working relationships between staff and
patients, as a full range of views and perspectives
can be brought into play, and each party understand
the perspectives and boundaries of the other.
These positives outcomes are nonetheless
countered by some challenges. The quality of
information on the Internet is variable, and may not
be applicable or relevant to all cases within a broad
diagnostic category. In addition, some treatments
described online may not be widely available (Salo
et al., 2004); (Dickerson et al., 2004); (de Boer et al.,
2007); (Iverson et al., 2008). Thus, patients may
access information of a dubious or harmful nature,
or which creates false hope or frustration and anger
for those who feel that a treatment they have read
about, and consider potentially beneficial, is not
available to them. Whilst many patients will be well
versed in the skills of information searching and
appraisal, some may need assistance to access,
evaluate and synthesise the range of information
with which they are presented. This leads to the key
question of where, and from whom, such people can
or should gain assistance in appraising the
information available to them, and how this will
affect healthcare consultations.
Internet use may effectively filter out some
consultations, if patients seek information and
advice online rather than from healthcare staff
(Iverson et al., 2008). The availability of health
focused social networking sites may mean that some
patients feel very little need for discussions with
healthcare staff, having achieved this elsewhere.
Conversely, if patients aim to discuss their findings
from a trawl of Internet based information with their
care providers in a meaningful way, this is likely to
increase the length of time which individual
consultations take, and change the skills which
healthcare staff are expected to have (Salo et al.,
2004); (Schwartz et al., 2006); (Iverson et al., 2008).
Checking and reinforcing information with patients
and directing them to further online resources may
nonetheless improve condition management, and
HEALTHINF2013-InternationalConferenceonHealthInformatics
140
reduce treatment needs in the long term (Iverson et
al., 2008), making a short term increase but long
term reduction in resource usage.
Whilst there are clearly benefits and challenges to
patients accessing a range of health related
information and advice via the Internet, this is the
situation in which practitioners now work, and is
likely to continue to be so (Schwartz et al. 2006); (de
Boer et al., 2007). Health care professionals
therefore need to consider the implications which
this has for their day to day work, professional roles,
and preparation for practice. As well as being
important for healthcare staff, it is an important
debate for healthcare consumers, so that what is and
is not seen as a reasonable expectation of healthcare
staff is clear.
5 WHOSE RESPONSIBILITY IS
INFORMATION RETRIEVAL
AND SYNTHESIS?
There are two key issues to consider when debating
how and by whom patients with long term
conditions should be offered assistance in collating
and synthesising the plethora of information
available to them on the Internet. Before deciding on
where responsibility lies in terms of accessing and
using Internet based resources, who is responsible
for a person's health needs related to a long term
condition requires clarification. Whilst acute and
long term health conditions exist on a continuum
rather than being absolutes, a broad distinction for
ease of discussion might be between acute health
needs, which are new for the individual, and long
term health needs, which the person has, or is
expected to experience, for some time.
One view is that as the number of people who
have long term health conditions is increasing, and
what were once health needs become a part of an
individual’s day to day life, managing them, and
accessing, interpreting, and making informed
decisions about the information associated with
them, becomes the responsibility of the person
concerned. In this scenario, it would be seen as the
individual’s responsibility, if presenting in a
healthcare encounter, to have accessed, read, and
summarised the key points of their findings about
their health, either themselves or with the help of
family, peers, or other media. Equally, in this
situation, healthcare professionals might have a very
limited role. For example, social networking sites,
such a patientslikeme.com create communities that
enable patients to obtain, evaluate, and explore,
treatment related information with peers, rather than
professionals.
A second perspective is that whilst a person with
a long term condition has a health need, which
affects them and which they manage day to day, it is
still a health need, because a disease process has
caused it, and responsibility for it is shared between
healthcare staff and the patient. In this model,
healthcare staff and patients would be jointly
responsible for gathering, evaluating and exploring
the alternatives for treatment and condition
management. Healthcare provision would then
include, as a core function, the ability to work with
patients on accessing, interpreting, and synthesising
the available evidence.
A third view would be that the person's condition
is primarily a health need, and the remit of
healthcare professionals to mange. In this view,
healthcare staff, as experts in health, would be seen
to have superior information to patients, and
responsible for imparting this to patients, directing
them to approved information, but not necessarily
for devoting time to discussing information which
patients have gathered with them.
As well as determining who should take on the
role of assisting patients to retrieve and manage
information, the approach which is taken to achieve
this also merits some thought. Eysenbach (2008) and
O'Connor (2010) distinguish apomediation and
intermediation. In apomediation, the apomediary, as
a peer or equal, recommends or guides a person to
existing information which is available and
accessible to them without the permission or
influence of the apomediary. Apomediation may
occur by means of people and tools, but it's purpose
is to guide peers to trustworthy information or add
credibility to existing information. The information,
and interpretation of it , however, remains available
to and controlled by the individual (Eysenbach,
2007). Intermediation, in contrast, refers to
situations in which an expert, such as a healthcare
professional, effectively stands between the
consumer, for instance a patient, and information.
The patient can only access the information via the
professional, and it is information which they have
developed, or approved.
Intermediation would perhaps would sit most
comfortably in the third approach, where healthcare
staff are seen as the experts, able to give advice and
direct others to appropriate, approved information
which they should take note of. Apomediation more
closely matches the first two options, although the
Doctor,NurseorApomediary?-WhatRoleshouldHealthcareProfessionalsPlayinAssistingPatientswithLongTerm
ConditionstoAccess,andMakeSenseof,InformationfromtheInternet
141
second option provides more possibility of grey
areas regarding the role of healthcare professionals.
In the first instance, it would be the responsibility of
the patient to select the sources of apomediation that
they require, including peer networking sites, and to
use these to gather and synthesise information.
Their need for access to healthcare staff would
largely depend on needing clinical input, or utilising
the gatekeeping functions of professional, such as
obtaining prescriptions or referrals (Hewitt-Taylor
and Bond, 2012). The second road is the more
complex, and would require some thought as to how
existing provision would be tailored or modified to
include apomediary roles.
6 CHANGING ROLES
Where there is a belief that responsibility for the
management of long term conditions is shared, how
current healthcare provision will accommodate the
role of healthcare staff in information retrieval and
synthesis requires some thought.
If such roles are seen as falling within the remit
of healthcare providers, who should take them on
requires consideration. This might be best achieved
by medical staff, as a part of their existing
consultative role. Alternatively, it could be a role
that clinical nurse specialists or practice nurses
adopt. The latter might create a one stop shop in
which patients who attend consultations with
medical staff have already had the chance to discuss
information retrieval, and explore their findings, so
as to present a more focused synopsis of their own
evidence for discussion during the consultation. A
third option may be for healthcare providers to
create a role and place for specialist apomediaries
within their structure. Currently individuals offer
such services, but outwith the healthcare setting, and
an option may be to incorporate non clinical staff
into such roles within the healthcare structure.
Equally, other models or approaches may exist and
be beneficial.
7 CONCLUSIONS
The volume of information available via the Internet
brings with it benefits and challenges for healthcare
staff and patients. A key issue which merits debate is
the way in which health care providers should
respond to the increase in information which patients
who have long term conditions are likely to access.
The way in which such conditions are
conceptualised, in terms of their nature and where
responsibility for their management lies are key
issues in debating whether intermediary, or
apomediary approaches to information management
are most appropriate. Where apomediation seems the
right approach, who should fulfil this role, and how
it should be funded and managed merits discussion.
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