A Step Towards the Standardisation of HIV Care Practices
Cristina-Adriana Alexandru
1
, Daniel Clutterbuck
2
, Petros Papapanagiotou
1
, Jacques Fleuriot
1
and Areti Manataki
1
1
School of Informatics, University of Edinburgh, 10 Crichton Street, Edinburgh, EH8 9AB, U.K.
2
Genitourinary & HIV Medicine, Chalmers Sexual Health Centre, NHS Lothian,
2A Chalmers St, Edinburgh, EH3 9ES, U.K.
Keywords:
HIV, Integrated Care Pathways, Formal Workflow Modelling.
Abstract:
Recent improvements to HIV care at the NHS Lothian Board have concentrated on a re-mapping of the pro-
cesses involved in their existing Integrated Care Pathway (ICP), in order to incorporate improvements identi-
fied during the ICP implementation and consider new advances in care. Our work aims to extend and enhance
this mapping by formalising care workflows using our logic-based tool WorkflowFM. This paper presents our
progress to date in terms of methodology and initial findings concerning actors, resources and workflows in-
volved in the first 3 months of HIV care for the Chalmers Sexual Health Centre. We argue that the resulting
models and analysis could address some of the difficulties faced by units providing HIV outpatient care.
1 INTRODUCTION
HIV infection is a major global concern. In 2015,
36.7 million people were living with HIV, and it was
the cause of 1.1 million deaths worldwide (UNAIDS,
2016). HIV care is complex and lifelong, which
makes the efficient collaboration of multidisciplinary
teams at local, regional and national levels important
(HIS, 2011). In Scotland, a recognition of the incon-
sistency of existing HIV services has led in 2011 to
the consideration of Integrated Care Pathways (ICPs)
as a key priority area within HIV standards (Standard
9 (HIS, 2011)). ICPs are recognised as valuable in the
long term management of HIV as a chronic disease,
but the particular complexity of the first 3 months of
care following diagnosis resulted in a prioritisation of
support for developing ICPs for the first 3 months of
HIV care across the NHS Boards (HIS, 2013).
An ICP is defined as “a structured chronological,
multidisciplinary clinical record, developed by local
development groups, to suit a local situation” (SPA,
2016) and NHS Scotland uses the one proposed by the
Scottish Pathways Association (SPA). The SPA also
points out that an ICP could contain a chronological
plan of a patient’s care or treatment, usage protocols,
information on guidelines or instructions, sign off
sections for allocating responsibilities for entries and
variance tracking sections for recording cases when
the patient does not follow the usual pathway.
The NHS Lothian Board has been using an ICP
for the first 3 months of HIV care since April 2012
(Wielding et al., 2013). The ICP acts as a map of
the patient’s journey through care and was devised
through a development process following a recog-
nised methodology (ICPUS, 2007) that involved mul-
tidisciplinary HIV care teams consultants, nurses,
pharmacists, other health professionals and pa-
tient representatives. Its creation proceeded mainly
through an adhoc identification of the various activ-
ities involved in the provision of care and resulted
in documents intended to capture a multidisciplinary,
chronological and structured case-record for each pa-
tient. The developed ICP pathway documents were
first used in paper, and since 2014, electronic form.
The development and use of the NHS Lothian
HIV ICP helped not only improve and maintain a
consistent standard of care amongst patients, but also
identify a range of potential improvements to care de-
livery. These included, for example, routinely check-
ing vaccination status prior to clinic visits, checking
results prior to patient attendance, cutting down on
redundant documentation and instigating some self-
completion of social and mental health status infor-
mation. Implementing such changes requires an on-
going re-thinking and recording of the flow of pro-
cesses. This is not uncommon, as ICPs are regarded
by the research community as continuous care process
improvement interventions (Vanhaecht et al., 2010).
As part of the continuous improvement process,
we started a detailed, post-hoc mapping of the work-
Alexandru C., Clutterbuck D., Papapanagiotou P., Fleuriot J. and Manataki A.
A Step Towards the Standardisation of HIV Care Practices.
DOI: 10.5220/0006251304570462
In Proceedings of the 10th International Joint Conference on Biomedical Engineering Systems and Technologies (BIOSTEC 2017), pages 457-462
ISBN: 978-989-758-213-4
Copyright
c
2017 by SCITEPRESS Science and Technology Publications, Lda. All rights reserved
457
flows
1
involved in the ICP in collaboration with the
NHS Lothian HIV ICP Development Group. We aim
to create and document an unambiguous model of
care that is shareable among the HIV team and across
NHS boards and can be modified as new policies,
guidelines and systems are introduced in HIV care.
Ultimately, this model could be the precursor to the
systematic design of an adaptable IT system that facil-
itates documentation, integrates the existing medical
record systems, tracks each patient’s journey, flags up
the tasks that need to be done, and routinely records
outputs such as completion rates, timescales etc.
The process of mapping the care processes in the
initial ICP in Lothian was iterative and relatively in-
formal: using a map of the pathway and asking multi-
disciplinary team members to add detail individually
or in groups, then reviewing and revising the map and
the resulting ICP document over multiple cycles. The
aim of the current work is to extend and improve these
mapping activities with the use of the process mod-
elling framework WorkflowFM (Papapanagiotou and
Fleuriot, 2014). This provides a diagrammatic inter-
face to build process workflows in a formal, system-
atic way, similar in some respects to other common
process modelling languages such as BPMN (Object
Management Group, 2011). In addition, though, its
logical core helps reduce design errors by providing
mathematical guarantees of correctness, systematic
accounting of resources and freedom from deadlocks.
The resulting workflows clearly depict the modelled
practices using a simple graphical notation, can be
easily modified to reflect policy changes and can be
executed to simulate patient journeys.
The capabilities of WorkflowFM fit well with the
process mapping needs of the HIV ICP Development
group, as it not only allows a structured, shareable
representation of their deployed ICP, but can also help
analyse and evaluate potential changes in the ICP be-
fore they are applied in practice. We note, in passing
(due to space limitations), WorkflowFM’s growing
track record in the analysis of various healthcare pro-
cesses. For a more in-depth look, we refer the inter-
ested reader to our work on collaboration patterns in
healthcare (Papapanagiotou and Fleuriot, 2014) and
intra-hospital patient transfers (Manataki et al., 2016).
This paper presents our methodology and progress
so far for the Chalmers Sexual Health Centre, one of
the largest HIV care providers in Scotland.
1
In this paper, we define a workflow as a set of well-
defined processes, sequential or concurrent, which take a
work task from initiation to completion. Processes can be
seen at different levels of abstraction – from single steps, to
aggregates of several steps, to even a whole workflow.
2 METHODOLOGY
In our approach, we adopt a 3-stage methodology:
1. Gain an in-depth understanding of HIV care
in the organisation by consulting available doc-
umentation, shadowing and interviewing the dif-
ferent involved stakeholders, including clinicians,
nurses, administrators and patients.
2. Use the results of the first step to formally spec-
ify the workflows for the existing Lothian ICP,
suggest improvements (e.g. with respect to ef-
ficiency or new approaches to patient care) and
propose new formalised ICPs for areas not cov-
ered by the current one using WorkflowFM.
3. Evaluate the formal ICPs by re-approaching
the participants from Step 1 with a questionnaire
about the key processes, exceptions, resources and
information used in the workflow diagrams.
At the end of the project, we will thus have a set
of validated formal ICPs that can be shared with dif-
ferent HIV care providers to help them re-think their
workflows and agree on an improved, up-to-date ICP.
3 DATA COLLECTION
The data for this work was collected by going through
the existing documentation, consisting of preliminary
flowcharts, checklists and tables devised by the NHS
Lothian’s HIV ICP Development Group, chaired by
D. Clutterbuck, a Consultant in Genitourinary and
HIV medicine and one of the authors of this article.
In order to gain a range of perspectives on the care
processes at play, we interviewed a variety of stake-
holders including (other) consultants, nurses, phar-
macists and coders. We focused on breaking down
the resources (paper or electronic) used, the flow of
information, how these depend on the patient and
time in their care, and whether the performed activ-
ities actually fit the existing records. Interviews were
semi-structured for one hour. With the participants’
approval in a consent form, interviews were audio
recorded, and notes were taken. Once the interviews
were transcribed, the data was analysed qualitatively.
4 INITIAL RESULTS
4.1 The Actors Involved in HIV Care
The main actors involved in HIV care in the Chalmers
Sexual Health Centre are nurses, consultants, phar-
macists and clinical coders. The responsibilities of
HEALTHINF 2017 - 10th International Conference on Health Informatics
458
nurses vary from doing basic clinical tasks such as
taking bloods or doing urine analysis (Band 2, also
known as clinical support workers), to giving pre-
scribed vaccines and treatments (Band 5), deciding on
treatment and seeing patients independently (Band 6,
the majority in Chalmers) and having all of the pre-
vious responsibilities but also a leadership role in the
management of HIV care (Band 7). Senior nurses
(Bands 6 and 7) are usually the first point of con-
tact for new patients. They also have health advi-
sor roles within their team, and thus can discuss part-
ner notification with patients. Additionally, during the
first 3 months of care they act as ICP Leads, making
sure that the ICP documents are completed within this
time. Senior nurses have their own appointments with
patients for completing the required elements of care
and filling in the ICP documents. Consultants are
specialist HIV clinicians who see patients for a med-
ical review and decide on their treatment. They work
during Monday or Thursday afternoon clinics to see
their own patients (6-8 appointments). They may also
be contacted about them outside of these clinics. On
a rotational basis, they occupy the role of senior gen-
itourinary medicine (GUM) consultants covering
the clinic throughout the day, which involves being
available for consultation with the senior nurses, see-
ing patients in person for urgent cases (e.g. a patient
being unwell), or liaising with the pharmacist regard-
ing emergency medication requests. Pharmacists are
responsible for medicine reconciliation (i.e. checking
what other medication patients are already on, what
drug allergies they have and checking for interaction
with their ARV regimen), advising patients on treat-
ment options and dispensing drugs. Clinical pharma-
cists also take part in formal and informal meetings
with doctors and senior nurses to decide on HIV treat-
ment initiation and treatment changes, providing ex-
pertise on appropriate drug choices, interactions and
suitability. During the first 3 months of HIV care, the
clinical coders are responsible for keeping the com-
puter records up-to-date and consistent and moving
information on blood results from electronic form to a
paper care plan for pharmacists for weekly meetings.
4.2 Resources Used
Chalmers currently use two main computer systems
to support HIV care: an Access database, initially
developed for infectious diseases in the Western Gen-
eral Regional Infectious Disease Unit (RIDU), which
now also contains forms for the ICP checklists, and
the National Sexual Health System (NaSH), a com-
prehensive patient management system for sexual and
reproductive health which was introduced for clinical
care in the Lothian Sexual and Reproductive Health
Service in 2011 and adopted for use in HIV care in
2014. Both of the systems are important for HIV care
in Chalmers. NaSH is used in all clinics in Scotland
for sexual and reproductive health care and facilitates
communication with other sexual health clinics, re-
placing paper records. The HIV database facilitates
prescribing and helps ensure that all of the necessary
steps for the first 3 months of care have been per-
formed. However, the two systems are not integrated
and they contain numerous common fields, thus lead-
ing to a lot of duplication. Keeping information up-
to-date and consistent between them is time consum-
ing and an ongoing concern. Common fields are of-
ten in different formats. Moreover, each of the sys-
tems has additional fields and functionality, making
information very scattered and requiring clinicians to
frequently move between the two systems. To speed
this up at regular meetings discussing the manage-
ment of each patient who is to be seen that week,
workarounds have evolved. Standard patient letters
developed on NaSH have been introduced, contain-
ing an overview of the patient’s health status, medi-
cation, immune status and serology and highlighting
any issues or outstanding tasks and gaps in the ICP
documentation. These are updated by clinicians af-
ter each patient appointment with the primary purpose
of forwarding them to the general practitioners (GPs)
or using as transfer letters, but also serving as a con-
cise summary of the ICP and its completion during
meetings. After each appointment, consultants and
nurses also write clinical note summaries on NaSH,
which are also used in meetings. Moreover, pharma-
cists use a paper care plan when discussing prescrip-
tions, which is pre-populated with blood results and
clinical issues from the two systems.
HIV clinicians may sometimes need to consult
other computer systems that do not currently commu-
nicate with NaSH or the HIV database: Trak for de-
mographics, lab results, ordering other tests including
imaging, and for onward referral to other specialities
(Trak is the main patient management system for hos-
pital services in Lothian, so patients will have a record
there if they are seen for other conditions), Apex for
lab results and SCCR for cervical smear test results.
4.3 First 3 Months of HIV Care
A patient may enter the HIV care pathway through
different means: he/she may be newly diagnosed with
HIV either in Chalmers or in one of the numerous
Outreach clinics doing point of care testing in Lothian
or transferred from another HIV health centre, or re-
ferred from their GP. Once he/she enters the pathway,
A Step Towards the Standardisation of HIV Care Practices
459
the ideal workflow involves the following processes:
1. No matter how he/she entered the pathway, the
patient is seen for a one hour first visit by one
of the senior nurses. Patients who were recently
diagnosed in Chalmers are given their diagnosis
during this visit. Moreover, all patients have a
confirmatory HIV antibody test and other baseline
investigations (depending on whether they have
done some of them previously) and have an initial
discussion with the senior nurse which varies very
much case-by-case, but usually is about how they
feel, what HIV means to them and how they are
going to cope. Very importantly, during the first
visit with a patient the senior nurse fills in as much
as possible of his/her NaSH record, registers the
patient on the database and fills in as much as
possible of the ICP checklist from the database to-
gether with the patient. The senior nurse must also
discuss with the patient about his/her availability
and preference for a certain consultant (e.g. some
patients may wish to be seen by the same con-
sultant as their partners). This, together with the
availability of the consultants and the day of the
patient’s first visit, will inform the senior nurse’s
decision regarding the team (Monday or Thurs-
day) and consultant to whom to allocate the pa-
tient. A diagrammatic representation of the work-
flow for the first visit for new patients after they
have received their diagnosis is presented in Fig.
1, and will be discussed in subsection 4.4. Af-
ter the first visit, the senior nurse books an ap-
pointment for the patient with his/her consultant
(the medical review visit) within the following 2
weeks, when investigation results are back.
2. The patient attends the first medical review visit,
during which the consultant usually discusses
with him/her presenting issues, past medical his-
tory, medications, sometimes family history, and
decides on a management plan. Depending on the
patient, antiretroviral treatment options may also
be discussed at this time. The consultant ideally
fills in medical fields on NaSH and the database
during this discussion. After the visit, the consul-
tant summarizes the discussion in a NaSH clinical
note and fills in the standard patient letter from
NaSH which, with the patient’s approval, is for-
warded to his/her GP.
3. If an antiretroviral treatment regimen has been
decided, the consultant contacts the pharmacists
about the treatment decision or proposed op-
tions. One of them will meet with the patient
(pharmacist visit) within the same clinic to col-
lect information on medications and drug aller-
gies and make a decision on medicine reconcili-
ation. The pharmacist may discuss treatment op-
tions with the patient, help him/her make a deci-
sion and provide the drugs.
4. For most patients, the baseline assessment and
ICP are completed within 3 months of entering the
pathway. Appointment frequency then decreases
once patients become more stable and their vi-
ral load is undetectable (usually within 6 months).
For patients who have an undetectable viral load
on therapy and do not have significant psycholog-
ical or social problems or other physical comor-
bidities, visits then occur every 6 months as part
of the organised programme of routine care.
These processes seem mostly sequential and quite
straightforward. However, we have marked them as
ideal because they only apply to patients who do not
require a lot of support, who are at a stage in their
disease when things can progress at a normal pace,
not needing an urgent medical review, and for cases
where emergencies never occur. Moreover, they rely
on the availability of staff and patients, and in partic-
ular limited numbers of staff and increasing numbers
of patients in Chalmers are an issue. In reality, the
ideal workflow occurs rarely. More often than not the
workflow has variances such as exceptions, optional
processes, repeated processes, or processes happen-
ing in any order, making it very complex. Such vari-
ances are due to the patients’ state, need for support
and how this evolves over time:
1. Sometimes a senior nurse must make a decision
to bypass a patient’s first visit in order to have
him/her see a consultant sooner. In such situa-
tions, the items from the first visit usually need
to be deferred to later, one or more, regular (30
minute) appointments with the senior nurse. The
most important cases are the following:
If a new transferred in or referred patient is
found during an initial prioritization before the
first visit (by checking the transfer/referral let-
ter or calling the patient on the phone) to be
unwell or already taking antiretrovirals and not
having enough medication left, the senior nurse
will set up an early medical review appointment
for him/her with an available consultant.
When a patient seems unwell and needs an ur-
gent review when coming in for his/her first
visit, the senior nurse contacts the senior GUM
consultant to see him/her immediately.
2. Especially if newly diagnosed, a patient may feel
distressed and need additional support, and so the
senior nurse may need to meet with him/her re-
peatedly (regular nurse 30-minute visits) after the
HEALTHINF 2017 - 10th International Conference on Health Informatics
460
Figure 1: Workflow for the first visit after diagnosis for new patients.
first visit. The nurse will usually try to fit such
subsequent appointments in the same day with the
patient’s medical review visit with the consultant,
but this is not always possible.
3. Following a senior GUM consultant visit, or the
first visit with the senior nurse, depending on
his/her state a patient may require an early review
appointment (occurring earlier than the default 2
weeks) to be booked with a consultant.
4. Following a medical review visit, a consultant
may decide that early follow-up appointments are
necessary, e.g. if the patient has abnormal results,
medical issues, mental issues, is vulnerable, has
comorbidities that affect his/her immune status or
will require an STI screen or vaccination.
Another important exception is given by the fact
that senior nurses often do not manage to finish filling
in all of the relevant parts of the NaSH and ICP check-
lists from the database during first visits. In this case,
they need to, sometimes repeatedly, book additional
routine nurse appointments with the patients.
The steps required for filling in information on
the systems are, actually, often performed in an order
which depends on the patient’s state and needs, and
earlier or later within the actual visits, which makes
them optional at different times. Although there is an
expectation for consultants to fill in some information
on the systems, we have found that this is not done
consistently, as they prioritise patient care. Some have
expressed their concern about the unclear sharing of
responsibility for filling in the ICP checklists, and the
lack of time to do this during an appointment.
Another less frequent exception is given by the
case of patients whose level of urgency for being seen
for a medical review is not completely clear to the se-
nior nurse after their first visit. In such circumstance,
the senior nurse first discusses with a consultant be-
fore booking subsequent appointments for the patient.
Apart from the work directly involving patients,
there is also important background work happening
in Chalmers during the first 3 months of care. In
particular, the two Chalmers HIV teams, the Monday
and the Thursday team, meet every week to discuss
the management of the patients who are scheduled in
clinic that week, and to check progress with the ICP.
Patients are discussed in turn, using the NaSH sum-
mary page (projected onto a screen from the system),
the pharmacists’ care plan with pre-filled bloods and
clinical details and their printed provisional prescrip-
tions. If a patient’s status is not clear or more up to
date information is needed, the team may also browse
through clinical notes or other pages from NaSH, the
HIV database and even other systems such as Apex.
Once a week, clinical coders move any additional in-
formation from NaSH onto the ICP checklists from
the database. The ICP leads (senior nurses) check
progress with the ICP checklists on the database for
each patient and flag up missing information before
the meeting during their admin time. They may use
clinical notes to remind consultants to fill it in. Once
information of a form is complete, they sign it off.
4.4 Rigorous Workflow Modelling
As mentioned previously, we model and compose the
workflows involved in the first 3 months ICP using
WorkflowFM, a graphical tool built on top of logi-
cal foundations. Processes in WorkflowFM are rep-
resented visually as rectangles, and their inputs and
outputs as edges. An example diagram of the work-
flow for the first visit for new patients after they have
received their diagnosis is provided in Fig. 1.
In this, one can clearly identify processes that are
independent and can therefore be performed concur-
rently, in any order. For example, once the patient
attends for the first visit, the senior nurse can per-
form different investigations, have an initial discus-
sion with the patient, commence the NaSH clinical
record, register him/her on the database or discuss
A Step Towards the Standardisation of HIV Care Practices
461
his/her availability and consultant preference in any
order. The priority of these steps is influenced by the
patient’s particular state and needs.
Other processes must be performed sequentially,
as they are dependent on the ones preceding them. For
example, only once the senior nurse registers the pa-
tient on the database can he/she commence the ICP
on the database together with the patient. Also, the
patient’s availability and preference for a certain con-
sultant partly influences the senior nurse’s decision to
allocate the patient to a certain team and consultant.
The final output of the workflow is the comple-
tion of the first visit and the evaluation of the level of
urgency of the patient’s state. The senior nurse may
not be able to clearly determine this, in which case
(marked as UnclearUrgency) he/she will need to dis-
cuss the case with a consultant before booking any
other appointments (as described in subsection 4.3).
WorkflowFM allows an executable deployment of
the developed models for both simulation and use in
practice. Simulation enables further analysis of the
workflows with respect to the available resources on
site (including clinical workload), acceptable com-
pletion rates, costs, conflicts across multiple path-
ways, etc. The models can also be deployed to sup-
port the ICP through rigorous tracking of information
and resources and automatically generated checklists
for each step. This provides a skeleton for a larger
system that can also integrate with the NaSH clini-
cal record system, provide decision support, and send
notifications and reminders to guide users through the
ICP. We view this as a promising way of taking our
work further once we conclude the evaluation of the
ICPs (Step 3 of our methodology – see Section 2).
5 CONCLUSION
This paper described our progress towards formally
re-mapping the integrated care pathways for the first
3 months of HIV care at the Chalmers Sexual Health
Centre. Our study showed that the most important dif-
ficulty faced by HIV specialists is the requirement to
continuously check and update information on sev-
eral non integrated systems. This leads to ineffi-
ciency, frustration and burdens them with the need
to ensure consistency in order to avoid errors. We
believe the formal models we have developed using
our logic-based tool WorkflowFM are not only a key
first step towards addressing these core issues and op-
timizing current practices, but also offer a coherent,
readily adaptable blueprint for designing and imple-
menting an effective IT support system for HIV care
at Chalmers and beyond.
ACKNOWLEDGEMENTS
This research is supported by EPSRC grant
EP/N014758/1. We would like to thank the team of
senior nurses, consultants, pharmacists and clinical
coders from the Chalmers Sexual Health Centre for
their valuable insights into their work practices.
REFERENCES
HIS (2011). Human immunodeficiency virus (HIV) ser-
vices - standards. Technical report, Healthcare Im-
provement Scotland.
HIS (2013). HIV implementation and
improvement programme. http://
www.healthcareimprovementscotland.org/our work/
long term conditions/hiv treatment and care/
hiv icp implementation.aspx.
ICPUS (2007). Integrated care pathway users in Scotland –
A workbook for people starting to develop integrated
care pathways. Technical report.
Manataki, A., Fleuriot, J., and Papapanagiotou, P. (2016).
A workflow-driven, formal methods approach to the
generation of structured checklists for intra-hospital
patient transfers. Journal of Biomedical and Health
Informatics.
Object Management Group (2011). Business Pro-
cess Model and Notation (BPMN), version 2.0.
http://www.omg.org/spec/BPMN/2.0/PDF.
Papapanagiotou, P. and Fleuriot, J. D. (2014). Formal
verification of collaboration patterns in healthcare.
Behaviour & Information Technology, 33(12):1278–
1293.
SPA (2016). What is an integrated care pathway? Technical
report, Scottish Pathways Association.
UNAIDS (2016). AIDS update. Technical report, Joint
United Nations Programme on HIV/AIDS.
Vanhaecht, K., Panella, M., Van Zelm, R., and Sermeus,
W. (2010). An overview on the history and concept of
care pathways as complex interventions. International
Journal of Care Pathways, 14(3):117–123.
Wielding, S., Clutterbuck, D. J., Wilks, D., and Panton, L.
(2013). Development of an ICP for HIV outpatient
care in Lothian, Scotland. In European Care Pathways
Conference Glasgow.
HEALTHINF 2017 - 10th International Conference on Health Informatics
462