“What matters to me”: Osteoporosis patients lead the way

The HOPE platform launch team: research coordinator Maree Cassimatis, Value Based Healthcare manager Faiza Wajahat, administration officer Deevanshika Thaman, Allied Health director Jacqueline Dominish, project officer Alison Warhurst, fracture liaison coordinator Minh Nguyen, project officer Vanda Leonardo, endocrinology staff specialist Christian Girgis and project officer Emma Saad.

Patients are changing the conversation from “what’s the matter with me” to “what matters to me” through real-time feedback for the first time at Western Sydney Local Health District (WSLHD).

The Osteoporosis Refracture Prevention Clinic at Westmead Hospital is the first clinic to collect patient reported measures (PRMs) on a new state-wide platform called HOPE.

Osteoporosis is a chronic disease that causes reduced bone density and strength, which can lead to frequent, painful fractures. The clinic helps people improve their exercise, medication use and calcium intake to prevent fractures.

Patients at the clinic now use an iPad to complete a set of survey questions relating to their general quality of life as well as specific to their condition, changing the conversation from “what’s the matter with me” to “what matters to me”.

Victoria Carroll was the first patient to complete the new survey with administration officer Deevanshika Thaman.

Clinicians then review the survey in real time and use responses to help guide discussions about the patient’s health and wellbeing, and address any issues or concerns.

Christian Girgis, staff specialist endocrinologist with the Osteoporosis Refracture Prevention clinic, said he is “excited to be breaking new ground” as the first service in the district to adopt the new HOPE platform.

“With patient-reported measures comes immense data – information on patients’ perceptions of their condition, their expectations, and important feedback on their experience while receiving care.

“And with this data, we hope to further innovate our service, deliver to our patients’ expectations and serve those most vulnerable in our district in a compassionate and evidence-based manner,” Christian said.

Maree, Deevashinka, Minh and Christian were key to the HOPE project going live with the Osteoporosis Refracture Prevention Clinic.

The HOPE portal has been developed by the Agency for Clinical Innovation and eHealth to support the collection of patient reported measures (PRMs) surveys across NSW, and will continue to roll out across WSLHD in 2021.

The program is supported by PRM project officers Vanda Leonardo and Alison Warhurst, who said, “we are so thrilled to have our first service up and running, and look forward to the year ahead as we continue to support clinicians across the district to embed PRMs into their clinical practice.”

Find out more about Patient Reported Measures and how they support patient-centred care at the Agency for Clinical Innovations website.