National Collaborative Network for Child Health Informatics

Board

Agenda Item 6.6

National Collaborative Network for Child Health Informatics

Meeting: 11 October 2017

For Official Use Only

RECOMMENDATIONs

That the Members:

1note the collaboration with experts in children’s health from across Australiato identify and scope potential digital health initiatives that will support the health and wellbeing of Australian children;

2note the considerable engagement and consultation with stakeholders across the country, including consumers, resulting in a high degree of support for the proposed initiatives;

3note the Jurisdictional Advisory Committee supports the five initiatives, and recommended the inclusion of an additional workstreamto developdetailed costings and business cases for national roll-out of the initiatives which has been added; and

4agreeto endorse the initiatives proposed by the National Collaborative Network for Child Health Informatics for funding by the Australian Digital Health Agency in 2017/18.

PURPOSE

The purpose of this paper is to update the Board on the National Collaborative Network for Child Health Informatics (the Network) and to seek endorsement for the initiatives that have been supported by experts in children’s health.

BACKGROUND

At its November 2016 meeting, the Jurisdictional Advisory Committee (JAC) endorsed two jurisdiction driven programs to be funded by the Agency to scope projects that addressed jurisdictional priorities but would benefit from a national approach. The National Collaborative Network for Child Health Informatics, led by NSW Health, and Embedding Telehealth in Clinical Consultations, led by NT Health, were endorsed by the Agency Board in December 2016.

The Agency contracted NSW Health in early 2017 to bring together the country’s leading children’s health researchers and practitioners to discuss ways data and technology could be used to improved health outcomes or children. The objective was to bring back to the Agency a set of proposals that could be developed and implemented at a national level.

The Network was established in April 2017 and has provided an opportunity for experts in the field of children’s health (including consumers and the industry) from across Australia to come together and discuss and identify ways that digital health can improve health and wellbeing outcomes for Australian children.

Paediatric care occurs in many different settings and involves many different care providers, who represent a wide range of clinical specialties. The high level of participation and engagement in the Network reflected this. A broad range of stakeholders from across Australia including consumers, clinicians, policy makers and industry attended different forums as part of the Network. In total, 332 people from every State and Territory contributed their ideas and expertise to co-design theinitiatives.

Theinitiatives have generated a significant level of enthusiasm – people are excited about the positive impact that the digital health initiatives will have on children’s health and wellbeing, at both a personal and population health level.

This paper sets out the proposals developed by the Network, and seeks endorsement to proceed with one or more to capitalise on the momentum the Network has already created.

SUMMARY OF ISSUES

The Network identified five potential initiatives for seed funding, which could be run as the first phase of the program.Each initiative, with the exception of research, could be run as a stand-alone project, with oversight provided by a national program team. Subsequent phases of the program would require additional funding, which is addressed later in this paper.

Program Phases

The first phase of the program would include a pilot for each initiative. It is anticipated that pilots would be run within one or two regions within a jurisdiction. Each pilot would provide an opportunity to codesign the implementation approach, test functionality, measure potential benefits and evaluate the initiative, to determine if it was suitable for a future national roll-out.

Proposed Initiatives

1. Child Digital Health Record

This initiative supports the development of an electronic version of the current paper based child Personal Health Records (e.g. QLD Red Book). It will support digital electronic shared care arrangements between parents and their healthcare providers across hospital, community and primary care settings. This is an opportunity to align the jurisdictional ‘baby books’ and to support families to better communicate with their health care providers and store health records digitally.

2. Uploading School Immunisation Records into the Australian Immunisation Register

This initiative aims to provide children and young people with a more complete immunisation record that is singular and complete and includes immunisations received through the school immunisation program. It would be easily and widely accessible (to appropriate users).

3. Digital Child Health Check

This initiative will digitise the Child Health Assessment, so that it is in the My Health Record and easily accessible. This would encourage early detection, diagnosis and intervention for common and treatable conditions and assist clinicians in identifying any services a child may require. It would also support clinicians in developing strategies to support the child’s needs and support the health system to better evaluate and allocate follow up services. It could enable research into the effectiveness of formal health.checks or health screenings

4. Digital Pregnancy Record

This initiative will deliver a Digital Pregnancy Health Record in the My Health Record that is accessible and integrated with existing clinical software, and can be easily contributed to by a woman's care team. It could include advice and useful information on pregnancy, immunisations, birth plans, etc, that are culturally appropriate and specific.

5. Research into the Longitudinal Child Digital Health Record

This initiative will establish a national research program into the lifelong digital health record. The initiative will engage with research institutions, government agencies and policy makers to establish key national research projects and themes utilising child development information, and support linking the data with other key national and state datasets, such as maternal health records, perinatal health records and birth defects registers.

Implementation Approach

The Network would where possible, leverage the existing momentum and expertise of the established governance structure. Jurisdictions would be requested to nominate potential pilot sites, based on existing capabilities, resources and readiness. Importantly, each pilot would be designed in a way that national scaling could be achieved.

FINANCIAL IMPLICATION

Initiative / FY 17/18
(million) / FY 18/19
(million) / FY 19/20
(million)
0. Core national program team / $0.8m / $1.4m / $1.4m
1. Child Digital Health Record / $1.3m / $2.3m / -
2. Immunisation Integration to AIR / $1.5m / $0.75m / -
3. Child Digital Health Check / $0.2m / $1.15m / -
4. Digital Pregnancy Health Record / - / $1.5m / $1.5m
5. Research into the Longitudinal Child Digital Health Record* / - / - / -
6. Business Case Development for National Implementation / - / $0.5m / $0.25m
TOTAL / $3.8m / $7.7m / $3.25m

*Funding for research activities has been nominally included in each of the initiatives above and will be dependent on progress of the initiatives. Supplementary funding through research grants and collaborative arrangements with academic institutions should also be explored.

Assumptions

• Costings include the program of work required to reach the pilot and evaluation stage of each proposed initiative and is based on developing minimum viable products.Costings assume that jurisdictions will contribute resources and funding for program operations including the jurisdictional implementation teams and that some resources and skillsets will be leveraged from the Agency, to support the NCNCHI Program Team.
• Governance costings are based on the NCNCHI Program Team driving national standards and approach at a portfolio level.
• Program will engage ICT vendors to build and deliver the solutions for each proposed initiative
• Costings do not include funding for a full national rollout and ongoing operational costs. The costings for national implementation will be developed through the Business Case Development work stream.

Consultation

The JAC considered the five initiatives at its meeting on 19 September 2017. The JAC supports the funding of these initiatives within the Agency’s 2017/18 Research and Development strategic priority.

LEVEL OF RISK

Given the high level of engagement and excitement that has been generated amongst the child health community, there is a significant risk that if funding is not received to progress with any of the initiatives, the community may disengage from participating in any future national digital initiatives.

There is also a risk that in the absence of a national program, states and territories will forge ahead with state-based solutions, which may make impact future national efforts to align digital health infrastructure.

PRIORITY AREA ORSTRATEGIC INITIATIVE

This aligns with the National Digital Health Strategy Strategic Priority 5 - Digitally-enabled models of care that improve accessibility, quality, safety and efficiency: Improving child health.

FUNDING

Funding of $4.9million is available in the 2017/18 Agency budget for projects in the Agency’s ‘Research and Development’ stream, of which this is one project.

As stated earlier, this program is only requesting funding for the initial implementation and evaluation of these concepts. It does not forecast nor seek funding for a national implementation which would be phase two of the program. The Agency’s ‘Research and Development’ stream of work in 2017/18 segues into Strategic Priority 5 in the National Digital Health Strategy “Digitally-enabled models of care that improve accessibility, quality, safety and efficiency”. These work streams involve providing seed funding, supporting cross-sectoral collaboration, and building a benefits case for new innovations, but not necessarily the scaling of these projects nationally or funding the ongoing operation of any programs. Rather, business cases would be considered within the broader AHMAC health reform agenda and funding sources determined through that process.

Paper prepared by eHealth NSW / Petra Milnes
Executive Officer, eHealth NSW / Dr Zoran Bolevich
Chief Executive and Chief Information Officer, eHealth NSW
CLEARED BY / Tim Kelsey
Chief Executive Officer

ATTACHMENTS

Attachment A:National Collaborative Network for Child Health Informatics Governance & Engagement Structure

AttachmentB:Groups and organisations represented

AttachmentC:Network members

AttachmentD:Initiative summaries