Making everyone count: it is time to improve the visibility of people with disability in primary care

Actions to support identification of people with disability in the Voluntary Patient Registration scheme

Around 4 million people, or 18% of Australia’s population, have a disability.1 On average, people with disability experience poorer health outcomes than people without disability as well as inequities in accessing health care.1 Primary care — comprising general practice, Aboriginal community‐controlled health services and government‐managed health services — is the frontline of Australia’s health system, and yet there are virtually no data available on access to, or quality of, this care for people with disability.2,3,4 Nor is there a standard method to record disability in Australian primary care clinical information systems.3,5

Without these data, it is impossible to determine drivers of health inequities, and to develop evidence‐informed policies to improve care and track progress towards reducing health inequities.2,6 Submissions to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability identified lack of data as an impediment to raising awareness about the needs and experiences of people with disability in the health care system, to understanding the issues and barriers, and to making improvements to services.7

The purpose of the Voluntary Patient Registration (VPR) scheme, as stated in the Australian Government’s draft Primary Health Care Plan 2022–2032, is to strengthen the continuity of care relationship between individuals and their regular general practice.8,9 Under the VPR, Australians can voluntarily register with their preferred general practice by completing a registration form. It is expected that this form will include several population group questions, including one to identify whether the person has a disability and, potentially, a question to determine the person’s disability group.

In this article, we draw on findings from research commissioned by the Australian Department of Health on developing disability questions for the VPR form. Data were collected and thematically analysed from 16 virtual focus groups and four interviews held in late 2021, with input from 65 individuals across 26 organisations throughout Australia. These included organisations supporting people with disability, health care consumer and representative organisations, primary care services, and Primary Health Networks (Box 1).

Overall, there was broad support for capturing patient disability information on the VPR form as long as this led to improved access to quality primary care and better health outcomes for people with disability. Knowing about patient disability was thought likely to assist general practitioners in being able to provide appropriate health care and put reasonable accessibility adjustments in place. In Box 2 we identify actions needed at multiple levels of the health system for these potential benefits to be realised.

Patient enrolment has been used previously in Australia in Indigenous health care;10 it is useful, therefore, to consider learnings from evaluations of the Practice Incentives Program – Indigenous Health Incentive (PIP‐IHI).10 Key transferrable lessons are:

• any associated funding model should be structured such that most of the funding is given after a threshold level of care has been provided, rather than payment simply for registration;
• there must be investment in upgrading the existing clinical information system so that practices can effectively identify relevant patients within this system, rather than establishing a parallel system; and
• health professionals will be motivated to participate when this participation offers clinical benefits for patients rather than just being an administrative exercise.

As with the PIP‐IHI enrolment scheme, VPR will include a process for obtaining consent. Ensuring informed consent requires providing information about the nature and purpose of the scheme in a way that patients can understand, establishing systems for people who may need support with consent, and providing guidance around proxy consent.

Evaluation should be undertaken during the first year of the VPR roll‐out to inform ongoing refinements to implementation, such as:

• assessing the data produced by the disability questions relative to specific purposes for which the data are to be used;
• improving the patient experience of completing the VPR form; and
• ensuring that general practitioners’ use of the data about disability benefits patients.

People with disability and their representative organisations must be actively involved in the design and implementation of this evaluation.

The inclusion of disability questions on the VPR form is a step forward in gathering data to highlight gaps in care for people with disability, and to drive policies that will realise their right to the highest attainable standard of health without discrimination, as enshrined in the United Nations Convention on the Rights of Persons with Disabilities.11 Attending to the actions outlined in Box 2, and the implementation of a rigorous formative evaluation, will optimise these potential benefits.