The Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) is working with VAHI to better understand how consumers receive and use health information following joint replacement surgery.
The AOANJRR have been collecting data on joint replacement since the inception of the Registry in 1999. These data enable outcomes to be determined based on patient characteristics, prosthesis type and features, method of prosthesis fixation and surgical technique used. In 2017, data collection was extended to include the patient’s perspective to allow for the collection of Patient reported outcomes (PROs).
PROs are information collected from patients on their health and quality of life. They can help to monitor patient progress, facilitate communication between professionals and patients, and can also be used to improve the quality of health services. When linked to patients’ clinical records, PROs data helps provide a comprehensive understanding of the impact of various healthcare interventions and treatments on patient outcomes. The PROs data collected by the AOANJRR is now available to contributing sites and clinicians.
Understanding how patients consume and understand PROs data
VAHI is interested in making registry data more accessible to patient populations - to allow for informed decision-making prior to treatment. The purpose of the AOANJRR project with VAHI is to understand how patients would like to receive and interact with health information and determine the optimal methods for delivering PROs feedback to patients.
Workshops were undertaken with consumers in South Australia and Victoria to understand the type of information patients want to receive before, during, and after a major joint replacement procedure and how they would best like to receive this.
Consumers shared that much of the health information currently available is inaccessible because it is written for health professionals rather than for patients. Having access to comprehensive information presented for a lay readership is preferred:
“A lot of resources out there are still written in language that people don’t understand and the grade level needs to be dropped right down. So, if someone picks up a resource or does search for information and it’s written by professionals it should be written in a way that everyone can understand it.” - Workshop participant
Consumers also discussed that they did not know where to access information about joint procedures and relied heavily on their surgeon to provide the right information. If a surgeon were to recommend a particular prosthesis or technique, patients were unaware that they could access information on the outcome of that prosthesis compared to other prostheses or techniques.
For more information on the partnership with the AOA, or on VAHI’s PROs program, contact Louise Kelly, Acting Manager, Clinical Registries and Patient Reported Outcomes via firstname.lastname@example.org.
Key take out messages from workshop participants
· Participants placed great importance on having access to independent and trustworthy information on health matters.
· While information about joint procedures is available, it is difficult for the patients’ support network to understand the life impact of joint replacement in the weeks and months following surgery. Patients asked for information on life impact to be made available to share with family and friends, to gain an understanding and be better placed to provide support.
· Participants discussed the value in having information available that mapped out what they should expect in the recovery phase. They indicated that a record or booklet format would be useful in managing their joint replacement journey.
· Participants discussed their access to health information and what is required for them to be able to make informed decisions about their health. The vast amount of resources available and the variation in the information provided made it difficult to determine the value of one resource over another.