A Step Towards the Standardisation of HIV Care Practices

Cristina-Adriana Alexandru

, Daniel Clutterbuck

, Petros Papapanagiotou

, Jacques Fleuriot

and Areti Manataki

School of Informatics, University of Edinburgh, 10 Crichton Street, Edinburgh, EH8 9AB, U.K.

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

457

ﬂows

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.

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

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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

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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