Active participation in healthcare leads to improved health outcomes. Research studies have indicated that consumers who understand their health conditions and who are actively involved in decisions about their own care are more likely to value treatment programs and have better health outcomes.
As PLHIV engage in life-long monitoring of their condition it is vital that they are supported to make informed choices and become active participants in healthcare. As diverse as every PLHIV is, so are their experiences within the healthcare setting.
Active participation and patient centred care
Encouraging active participation in healthcare begins with a patient centred approach to healthcare.
Patient-centred care is defined as:
‘is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families.’
Evidence shows that patient centred approaches assist in individuals initiating and adhering to treatment and reaching an undetectable viral load. Apart from these clinical benefits there is good evidence that patient-centred approaches to care lead to improvements in safety, quality and cost effectiveness as well as consumer satisfaction.
Patient centred care comes from a partnership approach between the patient and health professional that reflects a shared decision making model. Patient centred care facilitates informed decision making. Informed decision making is where an individual makes a choice on the basis of options, information and understanding that is available to them.
In order to make an informed decision, the risks and benefits of a particular procedure or treatment must be clearly explained. For example, commencing treatment would involve the weighing up of its benefits (such as the preservation of immune system and prevention of health problems associated with living long term with HIV) against possible detriments (such as potential side-affects and the necessity of life-long daily adherence to medication).
Protection of patient autonomy: Australian mechanisms
Sometimes the patient centred approach breaks down and it can be very disempowering and lead to a patient disengaging from care. Overcoming a breakdown in the relationship relies on appropriate feedback between the consumer and health provider. It is vital that both parties feel confident and safe to discuss concerns about healthcare, including healthcare choices. What are some of the ways a patient can voice their concerns or provide feedback?
- Speaking with your healthcare provider
If you feel comfortable, make some time to talk over your concerns with your healthcare provider. It is helpful to write down your concerns and take them with you to your appointment to help you feel confident about your concerns and ensure you don’t forget anything.
- Making a formal complaint to the practice or clinical service
Each practice or clinic has an internal complaints process which would involve writing a letter to the clinic outlining your concerns and any attempts you may have made to address your concerns. The clinic or practice will formally respond to your complaint. Most services will have a complaints and grievance process which should be available on request.
- Making a formal complaint to the Healthcare Ombudsman
The Healthcare Ombudsman is Queensland’s health service complaints agency. It is an independent body which investigates complaints about health services. You can make a complaint over the phone, online or in writing.
The Australian Charter of Healthcare Rights
The Australian Charter of Healthcare Rights outlines the rights of health consumers in Australian health systems. You may wish to raise them if you providing feedback or making complaint about your healthcare.
The rights include:
- Access: a right to healthcare
- Safety: a right to safe and high quality care
- Respect: A right to be shown respect, dignity and consideration
- Communication: A right to be informed about services, treatment, options and costs in a clear and open way
- Participation: A right to be included in decisions and choices about care
- Privacy: a right to privacy and confidentiality of provided information
- Comment: A right to comment on care and having concerns addressed
Still not sure what to do or where to go?
We are more than happy to discuss with you any concerns you have over your healthcare including complaint pathways by phoning 07 3013 5555/1800 636 241 or emailing firstname.lastname@example.org.
 Russell Renhard & the Victorian Council of Quality Improvement and Community Accreditation. Consumer participation in health care decision making in community based settings and its relationship to health outcomes. 1998.
 Institute for Patient- and Family-Centered Care website. Institute for Patient- and Family Centered Care. [available at www.ipfcc.org.]
 Beach, M. C., Keruly, J. and Moore, R. D. (2006), Is the Quality of the Patient-Provider Relationship Associated with Better Adherence and Health Outcomes for Patients with HIV?. Journal of General Internal Medicine, 21: 661–665.
 Australian Commission on Safety and Quality in Healthcare, available at: [http://www.safetyandquality.gov.au/our-work/patient-and-consumer-centred-care]