Suzanne Grant,NICM Health Research Institute, Western Sydney University, S.Grant@westernsydney.edu.au
The evaluation of WSIH is an ongoing, prospective observational study of patients attending WSIH and the practitioners and staff that care for them. Data collected will contribute to a patient registry, which will store data and enable observation of patient reported outcomes (PROs).
Developed and managed by Western Sydney University, the WSIH Patient Registry is the first nationwide database of its kind, and will be used to evaluate patient-reported outcomes (PROs) over time, such as quality of life, pain, mood, and stress, for patients who supplement conventional healthcare with therapies such as acupuncture, yoga, and mindfulness. This registry will perform prospective surveillance of participants attending the WSIH centre for clinical services. The registry combines de-identified patient-reported data with information from the Electronic Health Records documenting patient visit details, procedures offered, diagnosis, and patient pain-assessment score, as well as linkage with health information from Commonwealth administrative and other external datasets.
The WSIH Patient Registry will evaluate whether PROs differ with the frequency and duration of each particular intervention, while also tracking variables based on multiple characteristics of the participants, such as age, gender, ethnicity, race, and clinical condition. Essential data elements that capture PROs (based on patient response to questionnaires) and measures of clinical activity will be obtained comparing their baseline with results at 3, 6, 12, 18 and 24 months.
The following are planned:
- Reported in Annual Report
- Reported in other public reports
- Shared with other clinicians
- Shared with consumers
- Shared with medical colleges
- Summaries of results will be made available to investigators for dissemination within their clinics (where appropriate and according to discretion).
- De-identified and summated reports will be available to all stakeholders (including clinicians working at WSIH) and patients attending WSIH on which other written and oral presentations will be based.
- Future sharing may also include sharing the information and/or reports with other researchers and collaborators. Initially, third-party disclosure will not apply, and in the future, any third parties wishing to access data and publish findings must seek approval from the WSIH Data Governance Steering Committee and obtain relevant Institutional Ethics Committee endorsement where identified or re-identifiable data is sought.
It is intended that the following PROMs will be collected:
- MYCAW
- PROMIS-29
- Perceived Stress Scale-4 (PSS-4)Work Productivity and Activity Impairment (WPAI) questionnaire
- Adverse events
Condition-specific PROMs as follows:
- Brief Fatigue Inventory
- Godin Leisure Time Questionnaire
- Pittsburgh Sleep Quality Index
- Generalised Anxiety Disorder Scale (GAD-2)
- Depression and Anxiety Stress Scale (DASS-21)
- PROMIS Adult Short Forms (cover a range of symptoms and enable measurement of these to establish progress in treatment from baseline)
- Brief Pain Inventory (BPI)
- Pain Self-Efficacy Questionnaire (PSEQ)
- Pain Catastrophising Scale (PCS)
- Edmonton Symptom Assessment Scale (ESAS)
- Xerostomia Inventory
- Hamilton Anxiety and Depression Scale (HADS)
- Berkman-Syme Social Network Index (SNI)
- Functional Assessment of Cancer Therapy - General
- MD Anderson Symptom Inventory (MDASI) Core Items
- PAID Scale (Diabetes)
- Western Ontario and McMasters Osteoarthritis Index (WOMAC)
It is intended that the following PREMs will be collected:
- Patient satisfaction survey
- Health Education Impact Questionnaire (HeiQ)
- Patient Assessment of Chronic Illness Care (13-item version)
- Care Coordination Quality Measure for Primary Care (CCQM-PC)
Western Sydney Integrative Health
Pending, not operational at time of publication