=Paper=
{{Paper
|id=Vol-2336/MMHS2018_paper_2
|storemode=property
|title=Scanning the Medical Terrain: An Aid to Quicker Adoption of Guidelines
|pdfUrl=https://ceur-ws.org/Vol-2336/MMHS2018_paper_2.pdf
|volume=Vol-2336
|authors=Ellen A. A. Jaatun,Leigh-Anne Hepburn,Martin Gilje Jaatun
}}
==Scanning the Medical Terrain: An Aid to Quicker Adoption of Guidelines==
https://ceur-ws.org/Vol-2336/MMHS2018_paper_2.pdf
Scanning the Medical Terrain
An aid to quicker adoption of guidelines
Ellen A. A. Jaatun1,2 , Leigh-Anne Hepburn3 , and Martin Gilje Jaatun4
1
Department of Otorhinolaryngology Head and Neck surgery
Norwegian University of Science and Technology
Trondheim, Norway
ellen.jaatun@ntnu.no
2
St. Olav University Hospital
Trondheim, Norway
3
Digital Health and Care Institute
Glasgow School of Art
Forres, UK
L.Hepburn@gsa.ac.uk
4
IDE, University of Stavanger, Norway
martin.g.jaatun@uis.no
Abstract. Guidelines exist in order to ensure efficient, effective and con-
sistent provision of healthcare service. Unfortunately, existing guidelines
are often not adopted in a timely manner, even to the point of being out-
dated at the time of adoption. Hence, many healthcare professionals are
eschewing guidelines, sometimes leading to suboptimal outcomes. This
paper will examine one way of ensuring quicker adoption of guidelines in
the health sector.
1 Introduction
Implementation of guidelines and procedures is not performed at the same speed
and to the same extent in all parts of the healthcare service. For complex con-
ditions where multiple healthcare providers should work together to bring the
patient through a clinical pathway, this causes reduced interoperability of the
service, and may lead to delays in the clinical progression [1].
There are many barriers to the use of guidelines in healthcare, especially in
primary healthcare. One practical challenge is related to multimorbidity, where
different conditions affect each other, and management strategies may cause ad-
ditional impact on another condition, e.g., exacerbation of Chronic Obstructive
Pulmonary Disease (COPD) managed with steroids can cause increased blood
sugar levels in diabetes patients. Another common barrier for implementation
of guidelines is related to the time frame between development, publication and
implementation. This can cause the evidence which the guidelines are built on
to be outdated, and consequently make practitioners less interested in spending
time and effort to change practice [2]. Within this field, different profession-
als may have a different attitude and comprehension of standardisation, which
2 Ellen A. A. Jaatun, Leigh-Anne Hepburn, and Martin Gilje Jaatun
may cause difficulties in navigating through the system for both patients and
healthcare providers.
To remedy this challenge, more focus is given to standardisation from the
healthcare authorities. This strategy may have success in some areas, but may
not lead to substantial changes in others. An overall impression of the healthcare
field can be interpreted as quite chaotic.
In this study we have used chronic pain as a case to explore the problem
related to standardisation because chronic pain is a condition where patients
will need management and service for many years. Understanding the problem
and detection of changes has to be communicated and assessed in a standardized
way, and pain management is an interdisciplinary approach [3]. Additionally, the
clinical pathway is not a linear flow but requires continuous evaluation and new
iterations during the management process. Guidelines for management are avail-
able on different websites accessible for both patients and healthcare providers.
However, in older electronic health record (EHR) systems the content of the
guidelines is often not directly linked to the EHR. Hence, while working with
a patient, guidelines cannot give direct feedback on decisions or provide visual
help.
In clinical practice, many of the EHR systems are expensive and provide
limited support for work flow [4]. User involvement during implementation is
limited, since these systems typically are Commercial Off-The-Shelf (COTS)
systems, and user influence for adaptations and changes to the program is lim-
ited [5]. Consequently, we believe that there is a need for more flexible systems
tailored to and influenced by users’ targeted needs.
To illustrate this problem we have identified a clinical problem where an
interdisciplinary approach is needed. Building on our previous work [6], we will
try to identify how well current management strategies align with the clinical
guidelines, and identify areas for improvement where scientific knowledge can be
used to improve practice.
2 Background
Pain is a common reason for visiting a healthcare service. The International
association for study of pain (IASP) has defined pain as an unpleasant sensory
and emotional experience associated with actual or potential tissue damage, or
described in terms of such damage [7]. This means pain is an experience just like
hunger or being tired, and is experienced with different threshold and ability to
adapt from person to person. During the patient meeting, the healthcare provider
should classify the patients experience as an acute or chronic pain condition.
The acute pain is often more associated with the actual tissue damage and thus
might be easier to comprehend; the chronic pain may have limited peripheral
representation for the painful experience. In order to treat pain, we need to
understand it. There are different pathomechanisms that can cause pain, and
the different mechanisms may have different management strategies. However, a
Scanning the Medical Terrain 3
vocabulary that provides common understanding of the experience does not yet
exist.
Evidence shows that for many chronic pain conditions, the journey from
experiencing pain to defining the cause of the pain may take many years [8].
Additionally, studies on patients living with pain show that too many patients
are reporting high pain levels. The delayed diagnosis and poor management
results in increased suffering for patients and implies high socio-economical costs
caused by absence from or inability to work [8].
To remedy the challenges with communicating chronic pain, many different
assessment tools have been developed. Healthcare organisations have also devel-
oped clinical pathways and guidelines for pain management to improve efficiency
and quality of care. In Scotland a national clinical guidelines for chronic pain
management was published in 2013 [9]. In addition to the guidelines a clinical
pathway [10] and patient information was published [11].
In previous work we have suggested a model for pain management based
on reflective learning through a patient and clinical journey[12]. The process of
learning should be facilitated through a boundary object collecting and trans-
lating the key message during the interaction.
The aim of this study was to explore the current perception of the interac-
tion between patients and healthcare providers dealing with chronic pain and
compare this with our previous work. We also wanted to explore the perceived
patient journey from patients and healthcare providers and compare it to the
“gold standard” proposed by the national guidelines for chronic pain in Scot-
land. The final aim was to use the new knowledge from this study to highlight
options for intervention for improvement of service.
3 Method
3.1 Object of investigation
A local chronic pain organisation was invited to participate in 5 focus group
meetings. The participants were recruited through email contact with the pa-
tient organisation. Local primary healthcare providers were invited and recruited
through email. Some healthcare providers were recruited through colleagues and
others were mentioned by patients in the focus groups and invited to participate.
3.2 Focus groups and interviews
In order to address the aim, the study recognised a need to explore experiences of
receiving and providing care for chronic pain; uncovering perceptions of interac-
tion between patients and healthcare providers and identifying possible learning
opportunities. We also wanted to explore the perceived care journey from the
perspectives of patients and healthcare providers and compare it to the gold
standard proposed from the national guidelines for chronic pain in Scotland [9].
4 Ellen A. A. Jaatun, Leigh-Anne Hepburn, and Martin Gilje Jaatun
3.3 Design for Complexity
Patients and healthcare providers were subject to a systematic mapping based
on design methods developed by the Innovation School at Glasgow School of Art
(GSA) [6].
People living with chronic pain were invited to participate in one of five small
focus group design workshops that took place across three geographic locations
in Moray, Scotland (see Fig. 1). These focus group workshops aimed to identify
challenges and opportunities existing within current chronic pain management
experiences; and to identify any knowledge gaps and potential learning oppor-
tunities for people living with chronic pain. Thirteen participants with chronic
pain experience took part in the study, representing over twelve hours of discus-
sion. The people living with chronic pain were through discussion in the group ,
painting, drawing or building from different materials visualising their thoughts
or ideas for chronic pain management.
Fig. 1. Design workshop
Additionally, a series of semi-structured interviews were held with health
professionals from community, primary and secondary care contexts. Seven par-
ticipants took part, representing general practitioner care (GPs); out-of-hours
GP care; chronic pain consultant-led care; pharmacy; remedial therapy; and
chronic pain policy development, culminating in over fourteen hours of discus-
sion. Data collated during focus groups and interviews were analysed themati-
cally and findings are now discussed below, framed around the potential of an
innovation learning experience that can support interaction between patients
and health care providers.
Scanning the Medical Terrain 5
3.4 Interviews
We have conducted semi-structured interviews. The participants were partly se-
lected from the members of the chronic pain management team identified through
the national guideline for chronic pain management [9], and partly identified from
patient interviews. The content of the interview was based on defining the in-
dividual’s perceived responsibility for pain management, perceived ideal future,
and clinicians response to topics that may have come up during the patient focus
group meetings such as accessibility to healthcare providers, highlighting com-
petence in pain management and communication barriers between patients and
healthcare providers.
4 Results
4.1 Patients
Five focus group meetings (design workshops) were held with patients with
chronic non-cancer pain. During the workshop the conversation was recorded
and later transcribed. The qualitative data was read and specific segments of
text was identified. The segments were labeled and organized in thematic topics.
The topics were reduced into higher order topics consisting of five higher order
themes [13] as illustrated in Table 1.
Table 1. High-order themes – Patients
Chronic pain problem - Consequence
high order themes
Triage system Low priority compared to more acute
health issues and hard to access healthcare
providers
GP gatekeeper for further referral Limited access to other healthcare
providers
No physical sign of disease Disbelief and communication barrier
Medical jargon challenging and as- Communication barrier
sessment methods varied
Limited interdisciplinary communi- Not updated healthcare records
cation
The participants had normal network consisting of family and friends. The
patients considered the General Practitioner (GP) as one of the key personnel,
but for most of them the GP was hard to access, since their problem was triaged
and given low priority.
6 Ellen A. A. Jaatun, Leigh-Anne Hepburn, and Martin Gilje Jaatun
I’m battling to get a doctor’s appointment, would you come with me to
try and, . . . because having her with me, I feel . . . I’m easily shot down.
If they say, We’ve got nothing available for four months, Ill go, Okay
then, whereas she’ll say, ”Sorry, she needs to be seen” (Patient) [6]
The low priority was perceived as a devaluation of the condition that for many
of them led to severe functional and social impairment.
The inaccessible GP was considered a problem which reduced the possible
interaction with specialist healthcare professionals within the NHS who could
impact their chronic pain condition. However, healthcare professionals outside
the the NHS were still accessible. The network of professionals that could provide
support and pain relief were presented in a fragmented way, and it was not pos-
sible to detect that patients perceived any systematic approach for management
or interdisciplinary support from a chronic pain management team.
The doctors and the hospital, as much as I would like them to be my first
port of call, they never are. (Patient) [6]
A clinical pathway was not mentioned, and we were not able to detect a perceived
collaboration between the chronic pain healthcare providers the patient had
interacted with.
What is my next step. I’m not waiting two years for another referral.
They don’t know, that’s the problem, and I wish they would just say, ”I
dont know” (Patient about the GPs’ knowledge of chronic pain) [6]
On the contrary, the patients perceived a lack of information exchange between
the professionals. The patients’ perception of their own expertise was high, i.e.,
they mostly considered themselves as experts; however, their field of expertise
was not completely clear. Some considered their expertise to be on personal
matters, impact and own patient history, but also on management strategies for
chronic pain. None of the participating patients had acquired their knowledge
from the national patient information web page, but considered internet searches
as their main source of information.
The majority of the participants did not value their GP’s knowledge on
chronic pain issues as high, in spite of their dependency on their GP and high
value of the GP in the network of healthcare providers.
The patients displayed a strong belief in pharmaceutical management strate-
gies and presented barriers for physical activities and training. Psychological
management strategies were not highly regarded.
4.2 Healthcare Providers
Seven interviews with primary and specialist healthcare providers responsible
for chronic pain management were performed. The method was the same as
described above. We ended up with a list of five higher order themes (see Fig. 2
and Table 2).
Scanning the Medical Terrain 7
Fig. 2. Establishing the high-order themes
Table 2. Themes from pain specialists
Chronic pain problem – Consequence
high order themes
Limited resources. Chronic pain a Withholding information about special in-
frequent problem in the population. terest and competence in the field to avoid
attracting more patients
No practice consensus about man- Inefficiency and inconsistency and no
agement strategies seamless management approach
Individualisation of chronic pain May increase the variation in management
management approach strategies as long as the team does not col-
laborate?
Unstructured patients notes Inability to get a complete overview of the
patient history within the time available
Patients responsible for a compre- Neither patients nor healthcare providers
hensive patient history dependent have limited access to complete and reli-
on their memory or their ability to able source of medical history information
keep accurate notes with the key in- accessible within the available time
formation.
8 Ellen A. A. Jaatun, Leigh-Anne Hepburn, and Martin Gilje Jaatun
All of the participants shared an interest in chronic pain management, but
all except from the pain specialist would avoid flagging their special interest to
the patient.
Yes, but as I say, I dont tell anybody about it (GP with special interest
in chronic pain)[6]
The reason for this was a fear of getting referrals from other GPs or getting
too many patients. This was also a concern related to the resources required
for management of the patient problem, which were not adequate. A frustration
toward limited ability to provide efficient management and trust between patient
and healthcare providers was considered a major problem.
Many of the GPs considered that their main responsibility toward the patient
with chronic pain was to counsel the patient that they would have to accept that
the pain would remain as way of providing relief. The other professionals seemed
to be more focused on different remedies or treatment options for providing relief.
It also gives me a chance to drip feed the concept that you’re always
going to have pain. Stop seeking a cure going around, and round, and
round this merry-go-round of drugs which almost none of them really
work much. (GP)[6]
In primary care, the GP was considered to be the professional with the main
responsibility to provide pain relief, although each professional considered them-
selves as qualified and responsible for managing the patient’s problem. The GP
did not present a team of service providers, and each professional in primary care
considered themselves as independent contractors with a responsibility directly
toward the patient.
GPs, because we’re independent contractors, we are constantly looking at
systems for efficiency . . . (GP)[6]
In specialist healthcare the pain specialist considered the clinical guideline
for chronic pain management as a tool for primary health care. The organization
of management in specialist healthcare followed their own pathway, aiming to fill
in the gaps or extend the service from primary healthcare. From the specialist
healthcare point of view, the majority of patients should be managed in primary
care. Although the primary healthcare providers had access to information about
the patient from different management systems, the patient story was told by
the patient themselves. In special healthcare, the specialist would depend on the
patient’s story to get a complete picture of the problem.
So, the people presenting to the clinic with the referrals and in the clinic,
we take a step back. My typical way of approaching these people is to let
them speak. Listen to them and, in fact, occasionally I do not kind of
focus on the given pain. I want to know from the very beginning what
exactly has happened. (Pain specialist) [6]
Scanning the Medical Terrain 9
When asked, all healthcare providers knew of the specific national chronic
pain management guideline and clinical pathway, but the participants said they
were not following it in their clinical practice.
Yes. I mean, with any SIGN guidelines or NICE guidelines, you are en-
couraged to be looking at that regularly . . . In reality, I think the busyness
of life doesn’t allow us to do that in the real world. (GP) [6]
The results indicate a limited focus on a systematic approach for management
of chronic pain in primary care. Patients were not informed about an existing
systematic approach, and they were left to themselves to collect information
about their problem.
Most of the professionals knew of existing guidelines and clinical pathway for
chronic pain but did not use them for organizing their service, and they did not
expand the service to include other professionals.
From the patients’ point of view, an important milestone was obtaining a
diagnosis. Collecting data, evaluating results and making decisions could in many
cases take years in the current unsystematic way.
The different professionals working in primary care considered their service
to be a supplement to the GP’s service which was beneficial to the patients, but
added little to the data used for decision making.
The effort of providing updated and targeted patient information was not
perceived by the patients belonging to the group of patients.
5 Proposed Solution
Our results show that a service blueprint for management of a complex problem
such as chronic pain has not been adapted in current practice. This adds on to
the barrier for implementation of clinical guidelines related to already outdated
clinical evidence, which has been flagged as a major critical issue. Hence, the
current practice for implementation of new guidelines and clinical pathways pro-
vide too slow adaptation of practice and does not provide enough flexibility for
navigating through the guideline and pathway.
As shown in this narratives above from patients and clinical personnel, we
argue that the medical problems in primary care are not communicated unless
patients are presenting and elaborating the details. Accepting that patients are
proxies for their data, we propose a solution that collects the relevant information
from each patient interaction. Ideally, the various types of patient record systems
should have a feature for exporting the practitioners notes in a standardised
format. However, this is currently not the case, and as an interim measure we
propose to let the patient capture the relevant text (standardized ICD 10 [14]
or ICPC2 [15]) and a medical procedure code [16] on a mobile computing device
as well as identify the professional, e.g., physiotherapist, psychologist, or GP.
Most patients today own a smartphone which has more than enough com-
puting power to serve as a data collection device. We thus need a quite simple
Android/IOS app that can collect the data in a reliable and secure manner,
10 Ellen A. A. Jaatun, Leigh-Anne Hepburn, and Martin Gilje Jaatun
Fig. 3. Collecting data from various practitioners
and store it in encrypted form until it can be uploaded to a central repository
(see Fig. 3). The data should be organised according to the openEHR specifi-
cation [17]. Once uploaded, the data must be analysed to extract the salient
details. This will then serve as an input to other centrally managed decision
support tools. The patient data can be transferred to a map where the clinical
pathway can be visualized with time, place, diagnose, procedure and type of
professional managing the patients chronic pain problem. This map presenting
the individual patient path, saving the practitioner from having to read through
a never-ending patient history at each interaction.
Note that the last step is important, since the data deluge will prevent the
practitioners from getting the required overview and empower the patient to
provide more accurate information. The processing will start by normalising
recorded standardized medial code to ensure uniform coding.
The normalized text, professional healthcare provider and the classification
code for cause of visit, health related issues or diagnosis [15] and/or the procedure
performed [18] can be used to identify the current ”location” of the patient on
the clinical pathway.
For many of the chronic medical conditions, the clinical pathway is not a
linear path; patients may go through circles or loops of management strategies.
Setbacks can occur, which may lead to alternative interventions. The tool we
propose will follow the patient instead of the GP, and can be shared with health
professionals to help identify the greater picture.
Scanning the Medical Terrain 11
5.1 Security considerations
The app needs to be designed using current best practice regarding security for
eHealth software [19, 20], the full details of which we will not cover here. However,
since the idea is to use the patient’s own smartphone for data collection, this
poses an extra security challenge, since we cannot in general trust this platform
to fully protect information if stored in clear text on the device. We therefore
propose a hybrid encryption scheme where the collected data is encrypted using
a symmetric5 128-bit key, and the key is encrypted by the public6 key of the
central repository.
Once the collected data has been encrypted, the symmetric key is wiped from
the phone memory, and the encrypted data is no longer accessible to anyone,
not even the user, until it is uploaded to the central repository. At this time, the
central repository can recover the symmetric key and decrypt the data.
6 Discussion
Healthcare organizations have not found a way for rapid implementation of care
pathways and new guidelines. This leads to a vicious circle, where new guide-
lines for clinical practice will have limited impact on practice and provide limited
evidence of efficiency, efficacy and quality. We have developed silos of practice
which run independent of each other, and changes in one part of the interdisci-
plinary work flow does not necessarily lead to adoption of the new practices in
other areas of the clinical pathway, resulting in inefficient patient pathways as
shown in this study. At the same time new evidence and proposed best practice
is continuously published. Hence, the gap between theoretical knowledge and
clinical practice grows.
As the patient and clinician narratives above show, implementation of the
SIGN 136 guidelines for chronic pain management has not successfully been
performed during the 5 years they have been available [6]. Consequently, a dif-
ferent approach for rapid implementation is needed. The patient and healthcare
providers narrative above point at patient act as proxy for their data when they
visit the management team. The patients ability to present medical history play
an important part for decision making for each healthcare provider when history
of management is evaluated, as well as evaluating effect of previous management.
Providing patients with an easy script to present to the healthcare provider may
lead to more patient empowerment as shown in other studies [21]. The grow-
ing amount of information in the health record reduce the healthcare workers
ability to compare the clinical notes with the history presented by the patient,
and limited interoperability between different IT platforms reduce the sharing
of information in the care team. Consequently, the clinicians ability to navigate
5
The algorithm of choice is currently AES - note that to be quantum-safe, the key
length would have to be doubled
6
We currently recommend ECC with a modulus size of 256-383 bits – but note that
this option is not quantum-safe.
12 Ellen A. A. Jaatun, Leigh-Anne Hepburn, and Martin Gilje Jaatun
in the clinical pathway and locate new and previous management approaches to
the correct place in the guideline and pathway may be challenging. Additionally,
implementing and updating guidelines in clinical practice is time consuming, re-
quire substantial resources and often patient involvement in the implementation
process is limited. A position system based on tracking the patient movement
through the individual patient pathway for individual chronic pain management
represent the actual pain management practice. If an artificial Intelligent sys-
tem could compare the individual patient pathway with the proposed clinical
guidelines and the clinical pathway a visual representation of current individual
practice can be made. This may give patients a better cue for presenting their
patient history and ability to ask questions that both patients and healthcare
providers can reflect on. So far, this process of navigating through the system has
been the responsibility of the healthcare provider. However, the patient is the
only person who have been present through the whole process and consequently
could have presented the whole picture. Hence, a system that take into account
the current clinical pathway and the guidelines could aid the process of manage-
ment by matching the available data from the different healthcare provider with
the updated guideline.
Acknowledgment
This study was funded by the Digital Health and Care Institute. The authors
also wish to thank all participants of the study and in particular members of
Affa Sair, the chronic pain support group based in Moray who contributed their
time.
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