key: cord-1056342-aqs8qwks
authors: Power, Kevin; McCrea, Zita; White, Maire; Breen, Annette; Dunleavy, Brendan; O’Donoghue, Sean; Jacquemard, Tim; Lambert, Veronica; El‐Naggar, Hany; Delanty, Norman; Doherty, Colin; Fitzsimons, Mary
title: The Development of an Epilepsy Electronic Patient Portal: Facilitating both patient empowerment and remote clinician‐patient interaction in a post COVID‐19 world
date: 2020-07-15
journal: Epilepsia
DOI: 10.1111/epi.16627
sha: c01b613c0dfbcc75396a9f66b7eaa06cc6415fbf
doc_id: 1056342
cord_uid: aqs8qwks

OBJECTIVES: The current COVID‐19 pandemic stresses an urgency to accelerate much needed health service reform. Rapid and courageous changes being made to address its immediate impact are demonstrating that the means and technology to enable new models of healthcare exist. For example, innovations such as electronic patient portals (ePortal) can facilitate: a) radical reform of out‐patient care; b) cost containment in the economically constrained aftermath of the pandemic; c) environmental sustainability by reduction of unnecessary journeys/transport. Herein the development of PiSCES, an ePortal to the Irish National Epilepsy Electronic Patient Record, is demonstrated. This project, which pre‐dates the COVID‐19 crisis, aims to facilitate better patient‐ and family‐centred epilepsy care. METHODS: A combination of ethnographic research, document analysis and joint application design sessions was used to elicit PiSCES requirements. From these, a specification of desired modules of functionality was established and guided the software development. RESULTS: PiSCES functional features include “My Epilepsy Care Summary”, “My Epilepsy Care Goals”, “My Epilepsy Clinic Letters”, “Help Us Measure Your Progress”, “Prepare For Your Clinic Visit”, “Information for Your Healthcare Provider”. The system provides people with epilepsy access to, and engages them as co‐authors of, their own medical record. It can promote improved patient‐clinician partnerships and facilitate patient self‐management. SIGNIFICANCE: In the aftermath of COVID‐19, it is highly unlikely that the healthcare sector will return to a “business as usual” way of delivering services. The pandemic is expected to accelerate adoption of innovations like PiSCES. It is therefore a catalyst for change that will deliver care that is more responsive to individual patient needs and preferences.

In response to the COVID-19 pandemic, many aspects of healthcare delivery are rapidly changing. [1] [2] [3] There is increased focus on new technology-enabled care models that reduce the need for in-person contact between clinicians and patients. 1 Out-patient lists are being reviewed to determine which patients need face-to-face encounters and who are suitable for remote or virtual care. 2 COVID-19 is therefore a catalyst for change that is driving care that is more responsive to individual patient needs and preferences. Much of this will sustain and become the "new normal" of health service delivery in the post COVID-19 world. 2 In the following, an electronic patient portal developed by the Irish National Clinical Programme for Epilepsy (NCPE) 4 to promote improved patient-and family-centred care (PFCC) 5 is described.

While this project pre-dates COVID-19, the challenge of the pandemic is expected to accelerate adoption of innovations like the epilepsy portal which can facilitate: a) radical reform of out-patient care; b) cost containment in the economically constrained aftermath of the pandemic; and c) environmental sustainability by reduction of unnecessary journeys/transport.

The growing adoption of electronic patient records (EPR), is being accompanied by an increasing international interest in the use of electronic portals (ePortal) to provide people with access to, and engage them as co-authors of, their own medical record. 6-10 ePortal can enable improved trust, transparency and patient-clinician collaboration, 6 and promote a paradigm of patient-and familycentred care (PFCC). 5 PFCC which is about "putting the patient and family at the heart of every decision and empowering them to be genuine partners in their care" 11 is key to the management of complex chronic conditions like epilepsy as it recognises people within the full context of their lives not just their health condition. 12, 13 It is an approach to healthcare delivery that recognises and respects the expertise of patients and their families, places an emphasis on patient activation and empowerment, provides care that is responsive to individual patient preferences, needs and values and is grounded in mutual beneficial partnerships and continuity of patient-healthcare provider relationships. 12, 13 

This article is protected by copyright. All rights reserved to EPRs have the potential to facilitate delivery of PFCC by providing patients and their authorised care-partners (e.g. family member) with secure access to their health information when and where needed, clinic visit summaries, tools for patient reported outcomes and goal setting, aids for patient education and the means to securely message and communicate with their healthcare providers. [14] [15] [16] [17] [18] While reports on the outcomes of ePortal mediated healthcare and services vary, there is a general faith in the promise of the technology to facilitate improved patient engagement and enable innovative models of care. [14] [15] [16] [17] [18] For example, ePortals can support delivery of virtual care obviating the need for patients to attend the clinic in person. 1, 2 Similarly, the ePortal can act as a passport of care between healthcare providers or healthcare sectors as the patient or their care-partner will have the ability to

share key clinical information as required. 19, 20 Examples include supporting the co-ordination of care for those transitioning from paediatric to adult services 21 or continuity of care between hospital-based and community settings. 22 ePortal intervention is associated with improved psychobehavioural patient outcomes (e.g. health knowledge, self-efficacy, medication adherence and preventative health service utilisation) although mixed effects on clinical outcomes such as blood pressure, cholesterol, glucose, weight loss are reported. 15, 23-24 ePortal access is sending a message of inclusivity. 6 Patients report that accessing clinic notes via an ePortal provides an aide memoir, 18 helps build confidence in their healthcare provider, 25, 26 and allows them to act as safety partners as they can validate the content of their healthcare record. 27 In summary, ePortal functionality aligns with PFCC ambitions to actively involve patients and families as direct partners in care and decision-making, promote patient and family health and wellbeing, facilitate better communication, and enhance greater collaboration and coordination across the health system. This is of critical importance in the epilepsy care domain where challenges exist in truly realising integrated PFCC including the need for the healthcare system to partner directly with patients and families to design, develop and implement new models of care.

For more than a decade, a team of patients, families, nurses, doctors, allied health professionals, computer scientists, healthcare managers and policy-makers have been continuously evolving eHealth technology solutions to facilitate improved quality, safety and efficiency of epilepsy care in Ireland.

Core to this, is a bespoke National Epilepsy EPR 28 which underpins the NCPE. 4 The Epilepsy EPR is

This article is protected by copyright. All rights reserved a point of care system that currently contains the longitudinal epilepsy care records of approximately 10,000 individuals. 29 It supports a range of clinical tasks including in-patient and out-patient care, outreach services, telephone/virtual clinics, epilepsy surgery and Vagus Nerve Stimulation (VNS) treatment. Continuous evolution of the Epilepsy EPR aims to advance a model of PFCC. [28] [29] [30] A novel genomics module in the EPR is promoting precision care by supporting a multidisciplinary team of clinicians, geneticists and bioinformaticians in their interpretation of genomic sequence data in the context of an individual's phenotype. 29 Epilepsy EPR-based clinical data analytics is enabling interrogation of large volumes of population data in order to derive insights regarding disease progression and response to treatment that can be used in future clinical decision support thereby personalising care. 28, 31 The addition of the ePortal aims to encourage patients and/or care-partners (e.g. family member) to take a more active role in managing their healthcare by, for example, reporting outcomes which will allow clinicians to closely monitor individual response to treatment and be more proactive in their delivery of care. In summary, the Irish epilepsy care ecosystem has been growing its digital capacity for many years and has therefore been prepared in the current COVID-19 environment to move quickly to a remote/virtual care model where appropriate.

In this paper, we demonstrate the key components of PiSCES (Providing Individualised Services and Care in Epilepsy), the Irish Epilepsy ePortal, and outline its potential to facilitate the delivery of improved PFCC.

The PiSCES iterative development process and timeline is illustrated in Figure 1 . It was designed using a combination of information sources to elicit requirements and to generate a set of use cases describing the ways potential end-users would use the ePortal. From these, a specification of desired modules of functionality was established and used to guide the software development. Information sources included: ethnographic research conducted in the Irish epilepsy care domain; analysis of strategy, clinical guideline and patient support documents; and joint application design sessions.

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Ethnographic exploration of patient-and family-centredness in Irish epilepsy care provided significant domain knowledge to inform PiSCES design. Using observations, one-to-one interviews, focus groups and participatory action research, the practice and behaviour of epilepsy care was examined through the lens of those who receive (patients, families and carers) and those who provide (nurses, doctors, clinic support personnel, community resource officers) epilepsy care and services. [32] [33] [34] These domain experts provided information on their experience of: a holistic approach to patient needs;

patients treated as experts in their own care; recognition of patient autonomy; clinician-patient partnership and shared decision making; dignity and respect in the clinical setting and views on how information technology could support more PFCC.

Strategy, clinical guidelines and patient support documents provided context about overall health service improvement and reform ambitions, goals of epilepsy care and the role of the patient in their own epilepsy care. For example, Slaintecare 35 , Ireland's ten-year plan for reforming its health system and the Irish eHealth Strategy 36 both acknowledge the role ePortals such as PiSCES can play in supporting patients to proactively manage their health and collaborate with healthcare providers to achieve optimal health outcomes. Similarly, advancing patient self-management is a central goal of the NCPE 4 as it has been shown to improve outcomes, promote healthier life-styles and reduce health service utilization for people with epilepsy. 37, 38 The Epilepsy Ireland (the main advocate organisation for people with epilepsy in Ireland) Living Well with Epilepsy Toolkit 39 , a self-management resource, provides a manual journal where patients can record information about their medical team, their medications, seizure management and diary, support network, reminders about clinical appointments and so forth. These strategy, guideline and patient support documents further informed requirements gathering as they illustrated how priorities at the level of the healthcare system, organisation, and individual might be mediated using PiSCES.

This article is protected by copyright. All rights reserved experience of using the system to support a range of clinical tasks. As such, they were key design informants with significant awareness of how PiSCES might help promote patient-and familycentredness in epilepsy care.

To guide the software engineering of the system, elicited requirements were distilled and documented as a set of PiSCES specifications. An agile model was used by the software engineers to break the overall development of PiSCES into a series of iterations, typically of 2-3 weeks in duration. Each iteration was designed to deliver a subset of the specified PiSCES functionality. In this way, the delivery of each increment was used as a stage gate to further validate the defined requirements.

Representative end-users, for example, people with epilepsy (PwE) their family members or carepartners (carers) and health care practitioners (HCP), could test the iteration to ensure that it met relevant acceptance criteria and where necessary provide feedback to the software engineers to further enhance the PiSCES solution. This incremental-based development model generates working software quickly and creates the conditions for evolutionary protoyping where early use of the system in its intended natural environment informs a process of iterative refinement from which an effective application ultimately emerges.

We have developed an ePortal, entitled PiSCES, integrated with the National Epilepsy EPR which can be accessed by authorised and approved users from any location where there is an internet connection via a desktop computer, smartphone or tablet. The requirements elicitation described in section 2,

This article is protected by copyright. approximately 250 software engineering days, the associated design and implementation aspects necessitated further people and process costs (Figure 1 ).

To meet the highest security standards, PiSCES users must confirm their identity using a two-factor 

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By selecting "My Epilepsy Care Summary", the PiSCES user can access a synopsis of information about the patient that is stored in the National Epilepsy EPR ( Figure 2B ). Links to a summary of the (Figures 3 & S7) thus engaging them as a quality and safety partner in the clinical care process. While the purpose of the "My Epilepsy Care Summary" module is to provide users with an "at a glance" overview of the patient's epilepsy care history, a more detailed version of information can be accessed from the "Information for Your Healthcare Provider" module (Supplementary, Figure S6 ).

This section provides the user with access to a synopsis of seizure semiology information in two parts "First Unprovoked Events" and "Classified Seizures" ( Figure 3A ). Selecting the former reveals a description of the patient's first seizure-type event including age and date of occurrence, while the latter shows information about the patient's classified seizure type(s) e.g. aura experienced, event description, average seizure frequency and longest seizure free period.

The "Medications" module provides information on current and prior Anti-Epileptic Drugs (AEDs), Non AEDs and drug allergies ( Figure 3B ). For example, by selecting Current AED Medication ( Figure 3B ) a relevant list is illustrated. More detailed information is provided on medication dosage in the "Information for Your Healthcare Provider" module (see section 3.7 & Supplementary, Figure   S6 ).

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A list of diagnostic investigations that have been recorded in the Epilepsy EPR for the patient is provided in the "Investigations" module (Supplementary, Figure S1 ). Examples include Routine EEG, EEG (Long Term Monitoring Unit), MRI and Neuropsychology Assessments etc. Information exposed includes the date of the investigation and where it was performed.

The Possible Causes of My Epilepsy element ( Figure 4A) 

In the Epilepsy EPR, co-morbidities are documented according to the relevant body system: dermatological, endocrine, ENT, gastrointestinal, gynaecological, haematological and so forth.

Similarly, previous surgeries are categorised into: epilepsy surgery, other neurosurgery, and general surgery. Summary co-morbidity and/or previous surgery information documented in the EPR is accessible via the Medical and Surgical History button of the PiSCES ePortal (Supplementary, Figure   S2 ).

Via the PiSCES "Syndrome Classification" button, information about the patient's epilepsy syndrome classification as documented in the EPR can be accessed ( Figure 4B ).

Audit 

This article is protected by copyright. All rights reserved S3). Information beyond the last 20 accesses can also be made available by request. This function aligns with transparency and privacy principles of data protection. 40

A summary of information documented in the EPR is exposed via the PiSCES ePortal. PiSCES users can request that information be amended. For example, if they notice an omission or an error in a section of the record, they can select "If you would like any information to be updated, please click here" (see Figure 3B and Figure S7) . A clinician will review the amendment request and where appropriate update the relevant section of the patient's EPR entry. In this regard, PWE and/or their carers can act as quality and safety partners by validating the content of their epilepsy summary record.

PiSCES provides a space for patients (or their carers) to document their ambitions in relation to both their psychosocial and biomedical epilepsy care needs (Figure 2 & Supplementary, Figure S4 ). for their epilepsy care through a "Custom Goals" gateway.

During an encounter with the patient, the clinician will update the patient's Epilepsy EPR entry.

Functionality can then be used to automatically generate a clinic letter that will be populated with details recorded in the patient's EPR including patient demographics, referring clinician information, epilepsy seizure and syndrome classification, aetiology, current and prior medications, issues discussed during the clinical encounter and plans for further investigations etc. By selecting My Epilepsy Clinic Letters ( Figure 5A ), a list of EPR-generated letters, with the name and organisation of

This article is protected by copyright. All rights reserved the clinician who created it, can be accessed. By selecting any of these, the letter can be viewed via PiSCES ( Figure 5B ). Such letters are available without delay following the clinical encounter.

PiSCES provides patients functionality to report on their health status or healthcare outcomes. allows healthcare professionals to more closely and promptly monitor patient response to treatment.

PiSCES facilitates PWE/Carers to prepare for encounters with their clinician. The PiSCES "Prepare For Your Clinic Visit" module includes a checklist (see Supplementary, Figure S5 ) of things to do to prepare for the next clinical appointment. It also provides a facility for the patient/carer to document their questions to be reviewed with their HCP at the next clinical appointment.

The "Information for Your Healthcare Provider" section of PiSCES provides a more detailed version of the patient's epilepsy summary record than is available from "My Epilepsy Care Summary" Figure S6 ). This need could arise in the context of emergency care.

The Covid-19 crisis brings into sharp relief an urgency to accelerate much needed health service reform. As evidenced by the prompt and courageous changes being made to address the immediate impact of the pandemic, the processes and technology to enable new models of healthcare exist.

Across the world, a necessity, and even a moral obligation, for remote care has suddenly been thrust upon clinicians and patients. Similarly, the care of patients with epilepsy during the Covid-19 crisis in Ireland has largely shifted to telephone and video consultation interaction, with little face-to-face direct communication, except in emergency situations. PiSCES completely aligns with solutions that are now being designed and indeed implemented with increasing speed as we find novel and improved ways to communicate with patients and families, sometimes to replace, but more often to complement more traditional models of healthcare. We must seize this opportunity to sustain health service innovation in the post-coronavirus world.

PiSCES is a technical solution designed to promote patient-and family-centredness of epilepsy care.

To Figure S4 ) may adopt the engagement and self-management behaviours which lie at the heart of PFCC. Similarly, where a clinician wishes to more closely monitor a patient's response to a new or recently changed treatment regimen, the patient may be asked to report their progress ( Figure 6 ) over a given duration using PiSCES.

Healthcare democratisation is shifting traditional medical paternalism to more mutual partnerships between HCPs, patients and their families. 43 It is fundamental to realising the promise of PFCC where the role of the healthcare professionals changes from "experts that care for patients to enablers that support patients to make decisions". 44 PiSCES can help to democratise epilepsy care as it supports people in defining and achieving their health goals collaboratively with their healthcare provider. 44

This article is protected by copyright. All rights reserved Furthermore, across the world, healthcare reform has a quadruple aim of better health, patient experience, provider satisfaction and value for money. 45 Objectives include: a move away from simply treating ill people to promoting and maintaining health and well-being; a shift from hospitalcentric models to better integrated care which treats people at the lowest level of complexity that is safe, timely and efficient, and as close to home as possible. 4, 35 ePortal enabled PFCC such as that made possible by PiSCES is at the core of this reform.

However, while the potential benefits of PiSCES may be appreciated, their realisation can be more challenging. As illustrated in Figure 1 , design, development and implementation requires commitment of a range of stakeholders, who often have competing priorities, over a lengthy period.

Our ability to do this, has stemmed from a strategic approach to eHealth-enabled continuous quality In order to provide a comprehensive illustration of the PiSCES functionality in this manuscript, it lacks detail about the technology underpinning the system. However, the corresponding author may be contacted for further information. The current omission of a seizure diary facility in PiSCES is not an oversight. While this was identified as a requirement, it was intended that the project would collaborate with an existing seizure diary technology provider and integrate it with PiSCES.

Inclusion of seizure diary functionality is anticipated in a future PiSCES iteration.

The scope of this manuscript was to illustrate the functionality of PiSCES. The solution is currently being implemented with a core group of PwE and care-partners, epilepsy specialist nurses, allied 

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Accepted Article This article is protected by copyright. All rights reserved

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Accepted Article This article is protected by copyright. All rights reserved 40. Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation) (Text with EEA relevance)

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SUPPLEMENTARY IMAGE FILE: Power_R1_Supplementary_Images_1405202 FIGURE LEGENDS

We thank all the patients and their families, clinicians, and Epilepsy Ireland who informed the design 

None of the authors has any conflict of interest to disclose. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

Accepted Article epi_16627_f6.tif