Part 1
The chosen health information system is that of electronic patient records
management in primary care. This has been chosen because the author has an ongoing
interest in the interface between the primary and acute care sectors, and the
compatibility between the kinds of systems used, and wished to explore in more detail
the kinds of systems used in primary care and the research and literature available on
these. Information management is a vital component of modern healthcare systems
(Chaudhry et al, 2006). The literature for the most part cites the electronic healthcare
record as superior to its paper equivalent in terms of legibility, access and ease of use
(Majeed et al, 2008).
Electronic patient records systems for primary care must be responsive to the
requirements of the healthcare context, which, like many clinical settings, is in a state
of rapid change and development (Haux, 2006). Along with rapidly advancing
information and communications technologies, primary care settings must also
respond to increasing complexity and demand, with an ageing society influencing the
organisation of healthcare and the ways in which its information systems will develop
(Haux, 2006). Most primary care settings have made the shift from paper to
computer-based records, which has helped them to respond to the increase of data
being recorded, and has also aided in the newly emerging requirements of strategic
information management (Haux, 2006). This has led to a requirement for staff to be
educated in health informatics, and for primary care settings to employ specific health
informatics personnel, requiring different skills than their clerical predecessors (Haux,
2006). These health information systems can also help in clinical decision making,
particularly in primary care (Delpierre et al, 2004).
Primary care electronic patient records systems tend to consist of a database-type
system, modified according to individual need or according to the system purchased
by the practice. These databases can flag up important health information, due dates
for regular review, and medication history, alongside social history and demographic
factors which might have a bearing on the individual's clinical management and care.
The majority of primary healthcare providers use a combined electronic and paperbased
records system (Stausberg et al, 2003).
However, there is an ongoing awareness of the need to invest in research and
development of health informatics resources for the primary care setting. "Research
should include the development and investigation of adequate methods for strategic
information management, of methods for modelling and evaluating HIS, the
development and investigation of comprehensive electronic patient records, providing
appropriate access for health care professionals as well as for patients." (Haux, 2006,
p 270). There is scope to expand the functionality and the use of current health
information systems to allow for better exploitation of the existing (and often
expensive) resources within this sphere. There has been a trend of moving away from
just using HIS data for patient care and administration, towards using it for quality
management, risk management, and even into the realms of healthcare planning,
business planning, and clinical research (Haux, 2006). However, in primary care, the
scope to extend the use of the HIS as a means of communication between the multiple
and diverse agencies which can be involved in an individual patient's care is yet to be
realised. This author's experience of primary care setting health information systems
is that they are functional and effective, as long as those using them are conversant, or
literate, with the system. However, the emerging demand for patient-accessible
healthcare records presents new challenges for the primary healthcare setting health
information system. Hassol et al (2004) discuss the potential of patient access to
improve healthcare quality. They describe a study exploring patient attitudes towards
being able to access selected portions of their electronic healthcare record (Hassol et
al, 2004). This is an important point - the patient can only access selected parts of the
record. This demands a HIS with sufficient capacity to cope with the extra umbers
accessing the records (Detmer, 2003), and with password access to key sectors. There
may be challenges with this, particularly in relation to healthcare workers
understanding the system and understanding which segments of the patient health
record are accessible by the patient, and which are not. It would, perhaps, demand a
greater level of IT capability than some healthcare professionals possess, because
while some aspects of the record can be completed by non-clinical staff, most
healthcare professionals must complete their own clinical records. Hassol et al (2004)
and Kawamoto et al (2005) show that clinicians may be less than comfortable with the
use of electronic means to communicate with patients. There are few studies which
address this aspect of HIS within the primary care arena. However, Hassol et al
(2004) do identify patient concerns about confidentiality of healthcare records.
Pyper et al (2004) carried out a study to find out patient views on accessing electronic
health records in primary care, with a sample of 100 patients, and found that patients
were able to use the required technology, and found the records useful and
predominantly understandable, but again, patients were concerned about the use and
abuse of this information, about confidentiality and access. The respondents raised
the issue of having the ability to give informed consent for access to these records
(Pyper et al, 2004), which would raise issues about inter-professional or inter-agency
communication and would complicate the patient record system design and
management. Pyper et al (2004) recommend the need for further work to address
legal and ethical issues of electronic records and to evaluate their impact on patients,
health professionals and service provision. However, this study was carried out on
patients accessing their records for the first time, and different results might occur if
the study was carried out in a different sample with different experience of electronic
records, particularly in participants who might be more computer literate and aware of
the security capabilities of IT systems. It is likely that for the time being, primary
care providers will continue to use complementary electronic and paper-based patient
records, particularly as some studies indicate clinical and effectiveness advantages to
this approach (Stausberg et al, 2003).
The literature overall seems to indicate that while health information technology can
improve quality by, for example, increasing compliance with guidelines, enhancing
disease surveillance and decreasing medication errors, the evidence base remains
limited in scope and generalisability (Chaudhry et al, 2006; Epping-Jordan et al,
2004). The potential, however, for improving not only healthcare provision but the
patient experience and the patient/healthcare system/disease interface is considerable,
and should perhaps form the focus of more future research (Epping-Jordan et al,
2004). However, as there is emerging evidence that approaches such as computer
based personal health support systems can both improve patients' quality of life and
increase the efficiency of the use of healthcare systems (Gustafson et al, 1998),
primary healthcare electronic patient records could perhaps form the basis of this kind
of sysem for a range of chronic diseases and conditions. Certainly the typical primary
healthcare record system would need considerable augmentation to achieve this kind
of functionality.
There is some evidence to suggest that if healthcare providers build on the knowledge
bases from other fields which inform us about, for example, human computer
interaction and the usability of computer systems, they can evaluate the
appropriateness and effectiveness of health information systems from multiple points
of view (Kushniruk and Patel, 2004). But from the perspective of the clinical nurse,
the focus must still be on the patient experience, and improving the patient's interface
with healthcare providers. This might be enhanced by the range of electronic
communications available, but only for those who are familiar with, able to use and
have access to the right kinds of technologies (Rozmovits and Ziebland, 2004). There
is, therefore, a danger of healthcare provision within the primary/continuing care
setting excluding a proportion of patients (and their carers) who might be in most
need. However, ultimately, this author views this kind of health information system,
which can be interactive, accessed by the patient, and if used properly, exploited by
its users to improve communication, patient understanding of their own condition, and
ultimately, patient empowerment, as a positive force for the overall good of all those
affected by it. This will require practice teams to be proactive rather than reactive,
and perhaps require healthcare professionals to work and even think about their roles
in different ways (Epping-Jordan et al, 2004). But if future research provides clearer
evidence of efficacy, then the professionals must follow suit, if we are to provide truly
patient-centred care, and step away forever from the restrictions of the old institutions
of healthcare.
Part 2
The chosen online patient information system is a cancer based one, reflecting the
author's interest in this area. The needs of patients with cancer are complex and
challenging, particularly as the time period from diagnosis to treatment and ongoing
care can mean the disease is characterised by elements of both acute and chronic
illnesses. According to Eysenbach (2003):"Each day, more than 12.5 million healthrelated
computer searches are conducted on the World Wide Web." (p 356). This
demonstrates the wide-reaching implications of websites devoted to particular
diseases, such as cancer, not only in providing information about diseases and
treatment, but acting as virtual communities providing much-needed support
(Eysenbach, 2003). According to Eysenbach 92003), "in the developed world, about
39% of persons with cancer are using the internet, and approximately 2.3 million
persons living with cancer worldwide are online. In addition, 15% to 20% of persons
with cancer use the internet 'indirectly' through family and friends." (p 356). This
section of this assignment describes one internet resource: www.cancerbackup.org,
which will be called CancerBackup for the purposes of this essay.
CancerBackup is an apparently comprehensive site which claims to be able to answer
'any question on any cancer', providing 'one stop for all your cancer information
needs." This rather grandiose claim however does suggest that the patient or
concerned individual with a question about cancer will be able to find the information
they require, suggesting that the prime purpose of the site is as an information
resource. The site has multi-lingual option in a set of links on the home page
directing speakers of a range of languages to alternative versions of the site. The site
itself appears to be staffed by qualified nurses, as there are several links to allow users
to accessing nursing advice, either through 'speaking' to them or emailing them. The
site displays a prominent banner advertising a freephone number to allow users to
speak to a nurse via the telephone. The site is, at time of latest access (12-9-08),
recruiting for staff.
The site also invites users to take an online risk assessment for breast or ovarian
cancer, using an online risk assessment tool. There are links to the following topics:
about cancer, which provides general information about what cancer is and how it is
defined; cancer type, differentiating between the differing kinds of cancers; cancer
treatments; health professions, which is a link to resources aimed at professionals and
using different language; news; how you can help, which describes options for
contributing financially or getting involved in other ways, lists of supporters and
partner agencies such as Macmillan cancer care, and giving news about fundraising
events; and cancer community, which provides links to online 'community resources'
and invitations to join the online site communities. Links to the online communities
appear on almost every page, encouraging users to interact with others within the
communities and engage in a much more personal way with the site.
The site's online community is called 'What Now' which reflects a key question in
the experience of patients with cancer. It is described on the home page as containing
'blogs, forums, people'. This suggests a multi-faceted community. This may be an
indication of greater choice and more options for site users. The site invites you to
'chat in the chatrooms, discuss on the forums, send private messages, upload pictures
and videos and so much more…" which shows that there are a wide number of
different ways of interfacing with other cancer sufferers and their carers. The
homepage also offers TIC, a teenage online cancer community. This particular
resource is much more targeted towards the teenage user.
The front page also provides information and links relating to the quality of the site,
all of which seem to reinforce the reliability of the information. The merging with
Macmillan cancer care reinforces its reliability and enhances its profile with
healthcare professionals. There is an invitation to contribute to an online survey about
prescription charges, and another link to the blog highlighting areas which may be of
particular interest to certain users. The site also has a link stating that they comply
with the Health on the Net Foundation Code of Conduct (HONcode) standard, which
provides their quality assurance credentials.
The range of topics covered does appear to be comprehensive, and there are
information resource links to the different issus surrounding cancer, such as precancerous
conditions, lifestyle issues which predispose to cancer, healthcare links and
links to NHS resources. Throughout the site the user-interface is reinforced by
frequent invitations to access question and answer pages, and for cancer sufferers to
tell their own stories on the site's blog, or to meet other people with cancer.
The site is easy to access, with clear links to relevant information and while it is rather
'busy' and every page, from the homepage to almost every link accessible via the site,
is crammed with information, it is all in a user-friendly format and the language is
predominantly understandable by the lay user. The focus of the site is very much on
its users being those affected by cancer, but for the general browser, it may seem like
a very specialist site and one which is very much geared to those with cancer rather
than those just wanting to find out general information about cancer. There is a
clinical focus as well.
The site provides a range of options for contacts. There is the obvious link to contact
the CancerBackup nurses to have questions answered; there are fundraising links to
allow the user to contact the fundraising team or showing how people can make
donations to the organisation; there are contact links for the press team and the policy
team; and then other links to contact either the admin team, the web team or to make a
complaint. All of these are accompanied by pleasant photographs, and there are listed
links on the contacts page as well, repeating those presented in more graphic form.
The pages are easily nagivable and the user can move between pages. There are no
broken links or inaccessible pages, although a lot of the links and pictures are
repetitive.
Part 3
The patient information online resource www.cancerbackup.org.uk demonstrates
some of the key features of a patient-friendly resource. Ferguson and Frydman (2004)
describe the new emergence of the 'e-patient' as a healthcare consumer, and show that
the interface between such systems is of growing significance for the public and for
the healthcare providers. This site appears to be a response to this significant role of
electronic resources in improving the quality of life and ease of access to appropriate
information for cancer sufferers, and appears to be coming close to answering the
needs of most patients who can access the resource. This kind of development, and
particularly the merging with Macmillan Cancer Care, shows that this organisation is
making full use of the internet resources available to achieve its goals. These reflect
the goals of healthcare systems in general, of improving access to and quality of care,
whilst at the same time perhaps attempting to achieve cost reductions by streamlining
services and reducing the drain and demand on face-to-face services (Gustafson et al,
1999). While there is no information available as to the direct costs of this kind of
service, it is common sense that the vast numbers of patients and interested
individuals accessing this site might be doing so rather than accessing their primary
and acute care healthcare service providers, which would mean a reduction in demand
for NHS services. However, this does not mean that the patients would be getting the
same benefit from online interactions as they would from a face to face contact, and,
after all, if there is a patient in clinical need, they should be assessed physically by a
healthcare professional. A feature of this site which is not present here is the
redirection of true clinical enquiries to healthcare service providers, and away from
virtual interactions. As a nurse, this author would like to see advice on when to go
straight to a doctor or nurse made much more explicit on the site, including perhaps a
link on the homepage. This might improve the quality and safety aspects of the site.
What the site seems to offer the healthcare consumer, however, is a comprehensive
information resource which would allow them to become more conversant with their
disease, its treatment, their prognosis and some elements of their personal healthcare
journey. Gustafson et al (1999) clearly show that healthcare consumers who possess a
deeper and better understanding of the diagnosis, treatment and recovery from their
condition, and who has sufficient support from others, including fellow caner
sufferers, can cope better with their illness, can make more effective use of their
healthcare system and resources, and can also change their health-related behaviours
to influence the course of their illness. Such consumers also experience less
psychological distress from their cancer journey (Gustafson et al (1999). This
suggests that the CancerBackup site would have the potential to significantly
contribute to patient quality of life and perhaps support patients to improve their
outcomes in the shorter and longer term. It would mediate how they respond to their
illness. Its' matter of fact tone and plain language enhances this, which suggests it
has been designed with a very real awareness of how cancer sufferers respond to
information and how their state of mind may affect their ability to assimilate
important information about their condition.
The information provision function of such sites is significant. Eysenberg (2003)
underlines the findings from a range of studies which show that "provision of
information to persons with cancer [can] help patients gain control, reduce anxiety,
improve compliance, create realistic expectations, promote self-care and
participation" and other outcomes (p 365). Quality of life can be affected by the
patient's satisfaction with the information provided on such sites, and can improve
their sense of being involved in making critical decisions about care and treatment
(Eysenberg, 2003).
However, there are still some questions about the quality and reliability of cancer
information sites on the web. The chosen web site does seem to contain reliable
information, phrased in terms suitable for a lay audience. There is an ongoing distrust
amongst the medical and healthcare professions in the quality of internet resources
Rutten et al (2005) state the "understanding what cancer patients need to know and
from whom they receive information during the course of care is essential to ensuring
quality of care." (p 250). They carried out a review of articles over a set time period
and developed a typology summarising cancer patients' information needs and the
sources from which they received information, and found that the most frequent
information need was treatment-related. The Cancer-Backup site contains clear and
comprehensive links covering treatment, and addresses issues ranging from chemical,
biological and radiological therapies through surgical and hormonal treatments, and
even taking into account emerging therapies such as stem cell treatments. It also
addresses some complementary therapies in cancer, although this author believes this
area should be addressed in much more detail. According to Rutten et al (2005), the
most frequent information source for cancer patients is health professionals. Again,
this is reflected in the CancerBackup site because it is explicit about being staffed by
nurses who are available via telephone or email for consultation. These nurses are
experienced in cancer care.
Rutten et al (2005) found that when tracing patients' information needs and sources
along the continuum of care, during diagnosis and treatment, information needs about
the stage of disease, treatment options, and side-effects of treatment were prominent.
Again, CancerBackup seems to be equipped to address these kinds of questions.
Similarly, in Rutten et al's (2005) study, during the post-treatment phase of their
disease, patients continued to need information about treatment and recovery. There
is less emphasis within the CancerBackup site on the recovery phase of the cancer
patient's journey, and this is perhaps an area for improvement. Rutten et al (2005)
suggest that while health care professionals continue to be the most significant
sources of health information for cancer patients, because of the emerging importance
and increasing dominance of the internet as an information source, there is a need to
investigate more and develop more actively the kinds of resources that would be
valid, reliable and of high quality for these patients. However, this author would
suggest that these resources, no matter how well written, well developed or well
resourced by trained nursing staff, can still not replace the human interface of
healthcare delivery, and so their limitations must also be understood by all involved,
professionals and service users alike.
Eysenberg (2003) describes internet-based virtual communities as possibly the single
most important online resource for people living with cancer. Although there is the
continuing discussion of the ways in which online communities and communications
might lead to increase social isolation in the 'real world', these virtual communities
provide the peer interactions and support that can improve patient mental health, and
reduce stress and cancer-related trauma (Eysenberg, 2003). However, Eysenberg et
al (2004) show that for many of these communities in relation to cancer care, there is
some degree of facilitation by a health professional, from trained individuals who lead
the groups and communities as moderators or facilitators. CancerBackup is such a
site, with qualified nursing staff involved in monitoring and moderating the site, and
engaging in discussion, participating in blogs, and the like.
Eysenberg et al (2004) question the true value of such communities in relation to
measurable quality of life and other wellbeing scores, and show that there is
conflicting evidence about effects, for example, on depression scores. Yet this author
would suggest that such online communities must serve some kind of function for
these patients, given how much use there appears to be of these sites. It may simply
be that there are certain people drawn to this kind of communication and community
engagement, and that for these, it provides good support. As Rozmovits and Ziebland
(2004) suggest, the way that people perceive their information needs and preferences
can be affected by their identification with particular groups of people. Therefore, the
targeted teenage online community within CancerBackup may be more suitable and
more effective in meeting the needs of this sub-set of cancer patients. It might be that
this site, in approaching all cancer patients, does not really provide the community
support or cohesion required by individual types of cancer sufferers. Research which
evaluates usage of this site would be useful to shed some light on this issue.
However, it is important for healthcare providers not to assume that such resources
can replace high quality 'real world' healthcare interactions and support. Baker et al
(2003) state that "although many people use the internet for health information, use is
not as common as is sometimes reported" (p 2400). Carlsson (2000) states that the
majority of the information patients receive about cancer and their treatment options
is provided by healthcare professionals, but that it is more likely that patients will
seek information elsewhere if they do not receive sufficient information or sufficient
quality of information or an inadequate response to their inquiry. Baker et al (2003)
also argue that the effects of internet use on healthcare utilisation is potentially less
than assumed by many, and so healthcare professionals should not assume such
resources are available to or suitable for all their patients. Carlsson's (2000) study
shows that most patients are satisfied with the information they are given in the health
care setting, which may be why for their respondents there was not so much use of
alternative sources of information, but it could also be that they were not familiar with
these alternative options. Carlsson (2000) shows that there were many different
reasons for searching for information from sources outside the standard healthcare
system, but that this information was complementary to the information they had
already received from healthcare providers. Another study shows limited use of these
kinds of resources (Kakai et al, 2003).
