Healing House Research Foundation
Practice-based evidence,
ethically governed.
Healing House Research Foundation sits alongside the service and training arms. Its remit is practice-based research, advanced neurological and health assessment technologies, privately funded pilot programs, and deeper healing work with ethics oversight separated from clinical operations.
On this page
01 – Mission
Why practice-based research.
Most disability and NDIS-relevant research in Australia is funded through universities and large institutes, with frontline providers often appearing as recruitment sites rather than research partners. The result is a long lag between what works in a clinic, school or home and what reaches the published literature.
Our argument is that providers delivering supports daily are uniquely placed to gather meaningful outcomes data – provided the ethics and governance are right. That means a Human Research Ethics Committee constituted under the National Statement on Ethical Conduct in Human Research (2023), a conflict-of-interest regime that separates clinical staff from research staff for individual participants, and informed consent that is genuinely independent of service delivery.
The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability identified the disability evidence base as thin and inconsistent, and called for a nationally consistent approach to disability data, evaluation of reforms, and research that informs how to prevent harm. Practice-based research, run under proper ethics oversight, is one of the ways providers can contribute to that evidence base rather than wait for it.
Volume 12 of the Royal Commission’s Final Report identifies ways to improve data collection and analysis about the experiences of people with disability so that the evidence base for disability services and policy can be strengthened.
Summarised from
Final Report – Volume 12, Beyond the Royal Commission
.
02 – Ethics
How we govern research ethics.
Research with people in Australia is governed by the National Statement on Ethical Conduct in Human Research (2023), issued by the National Health and Medical Research Council. The National Statement requires that research with human participants be reviewed and approved by a Human Research Ethics Committee (HREC) constituted under its membership rules – including community and consumer members with no paid affiliation to the institution, a person with a pastoral care role, and a qualified lawyer.
We also work to the Australian Code for the Responsible Conduct of Research (2018), which sets the broader integrity framework for honest, rigorous, and accountable research practice in Australia.
Governing framework
The
National Statement on Ethical Conduct in Human Research (2023)
issued by the NHMRC. Effective 1 January 2024.
1300 000 000
HREC reference
[HREC reference number – issued on registration with an NHMRC-registered HREC – pending]
HREC composition
[HREC member roles per National Statement (2023) requirements – chair, two community/consumer members with no paid affiliation, pastoral-care member, qualified lawyer, plus research-active members – pending]
Conflict of interest
Researchers may not be the same staff delivering a participant’s clinical service, unless explicit secondary consent is given by the participant after independent information about the research. Investigators declare interests in writing before each project.
Data security
Personal information is held in line with the
Privacy Act 1988 (Cth)
and
Australian Privacy Principle 11 – Security of personal information
. Identifiable data is access-controlled and encrypted at rest; analysis runs on de-identified extracts wherever possible.
Retention of de-identified data
The NHMRC
Management of Data and Information in Research
guideline sets minimum retention periods. Seven years from the date of the last published or reportable outcome is the typical minimum for non-clinical research; longer periods apply where required by an HREC, funder, or jurisdiction. Specific retention period for each project: [Per-project retention period – set in HREC application – pending].
Voluntary participation. Taking part in research is never a condition of receiving services from us. You can decline, or withdraw at any time, and your supports continue exactly as before.
03 – Governance
Foundation governance.
The Foundation will operate under its own governance, separate from the service arm, with a board, declarations of interest, and an independent HREC. Its annual report and audited financials will be published once the first full year of operation has closed.
Legal structure
[Foundation legal structure – separate company limited by guarantee, charitable trust, DGR, or unincorporated arm – pending]
Board composition
[Board members, positions, and declarations of interest – registered with the ACNC once incorporated – pending]
Funding model
Research foundations of this kind are typically funded through a mix of own consulting income, philanthropic donations (with deductible-gift-recipient endorsement where granted by the ATO), competitive grants from the NHMRC, the Australian Research Council, and the Medical Research Future Fund, and partnerships with universities and government departments. Specific funders for the Foundation: [Confirmed funders, grant references, and donation channels – pending].
Separation from clinical operations
Research staff are not the same people delivering the participant’s clinical service without explicit secondary consent. Clinicians may contribute to research design and authorship under declared interests, but recruitment, consent, and data analysis sit with the research arm.
Annual report
[Annual research report – published once the first full year of operation has closed – pending]
Regulator
Once incorporated as a charity, the Foundation will be registered with the Australian Charities and Not-for-profits Commission.
04 – Research areas
What we plan to research.
These are areas of interest, not active studies. Specific projects are listed once they have HREC approval and registered investigators. We don’t publish study lists before ethics approval is granted.
Outcomes from assessment-led behaviour support
Linking psychometric and adaptive-behaviour scores at intake to behaviour support plan outcomes over time. The intent is to test whether assessment-led formulation produces measurable change for participants and their families.
DVA and complex trauma assessment
Assessment models for veterans, DVA-linked presentations, and people with complex trauma where disability, mental health, neurological signs, and service history overlap.
Huntington disease, Parkinson disease, and MND
Neurological and neurodegenerative disability research focused on changing support needs, communication, cognition, behaviour, assistive technology, and family-reported outcomes.
Autism and developmental support pathways
Practice-based research into autism assessment, developmental supports, Thriving Kids transition questions, family coaching, and evidence that remains useful across funding systems.
Assistive technologies and participation
Evaluation of assistive technology recommendations, implementation barriers, home and community uptake, and whether technology changes participation in daily routines.
Enhanced and patented assessment methods
Development and validation work for enhanced assessment methods, digital scoring, longitudinal profiles, and protected intellectual property where appropriate.
Implementation fidelity in behaviour support plans
How closely behaviour support plans are followed by frontline staff in real settings, and which conditions improve fidelity. Implementation fidelity is repeatedly identified in the literature as the missing link between plan quality and participant outcomes.
Restrictive practice fading and authorisation outcomes
Tracking documented fading schedules against actual reductions in regulated restrictive practice use, in line with monthly reporting under the NDIS (Restrictive Practices and Behaviour Support) Rules 2018.
Pilot studies and feasibility trials
Small, ethics-approved pilot studies that test recruitment, measurement, acceptability, and operational feasibility before larger research claims are made.
Pending – supplied by stakeholder
Current studies – listed once HREC-approved
Title, lead investigator, HREC reference, and recruitment status will be published per study.
Pending – supplied by stakeholder
Partner institutions per study
Universities and research collaborators, with their roles and ethics arrangements.
05 – Events and pilot studies
A research events format,
ready when studies are ready.
The public format can work like a clinical-neuroscience events calendar: each listing names the topic, delivery mode, intended audience, ethics status, and whether it is education, recruitment, or dissemination. We will not publish dates until the study or event has a confirmed owner.
Clinical neuroscience workshops
Short courses and workshops for clinicians, support teams, and partner services once the relevant content has governance approval.
Pilot study briefings
Plain-English sessions explaining a pilot study question, eligibility, consent, recruitment status, and what participation involves.
Research symposia
A Carrick-style events format for focused topics such as complex trauma, Parkinson disease, Huntington disease, MND, autism, and assistive technology.
Partner calls
Calls for universities, providers, funders, and lived-experience advisors to join HREC-ready project teams.
06 – Partnerships
Partnerships welcome.
We are open to partnerships with universities, philanthropic funders, and government departments – including the Department of Social Services, the National Disability Insurance Agency’s evaluation work, and the Medical Research Future Fund. The Foundation can host honours, masters, and PhD candidates under joint supervision, and contribute de-identified outcomes data under specific HREC arrangements.
Universities
Co-design, co-supervision of HDR students (Honours, Masters, PhD), and data sharing under HREC-approved protocols.
Funders
Philanthropic grants, NHMRC and ARC partnership grants, and Medical Research Future Fund tenders aligned with our research areas.
Government and NDIA
Outcomes evaluation, contributions to NDIA reform evaluation, and foundational supports work as those settings are confirmed.