Health consumer organisations, also known as patient groups or patient advocacy groups, are not-for-profit organisations representing the interests and views of healthcare consumers, their families and carers.
Health consumer organisations range in size and scope from small volunteer groups to large organisations. They generally promote views that are independent of government, the pharmaceutical industry and healthcare providers.
Depending on the size of a health consumer organisation, staff may have multiple roles. Some health consumer organisations are run by volunteers; many start out that way. Others have staff numbering into the hundreds. It is common for volunteers and staff to have a personal experience with the health condition.
When setting out to work with health consumer organisations, pharmaceutical companies are aware that:
- Health consumer organisations vary greatly in their expertise and resources.
- There may be several health consumer organisations working with the same disease or condition.
- Some health consumer organisations have both state and national offices, and the people and resources involved in a health consumer organisation may be located in different parts of Australia.
Governance and regulation of health consumer organisations
Most health consumer organisations are legal entities – either incorporated associations or registered companies – and are usually not-for-profit organisations. Some are informal networks of consumers that are not legal entities. To receive Government and other grant funding, a health consumer organisation is usually required to be a legal entity, or to have its funds administered by a legal entity.
Some health consumer organisations are managed by professional boards, while others are driven by working committees made up of people with a connection to the health condition.
Depending upon what type of legal entity a health consumer organisation is, it will have to meet varying obligations relating to financial and other types of reporting and decision-making processes. Many (but not all) health consumer organisations are charities, which have additional regulatory requirements (and entitlements).
Funding of health consumer organisations
Many health consumer organisations have multiple sources of funding, including:
- membership fees
- donations and bequests
- fundraising activities
- corporate sponsorships
- government grants
- philanthropic and corporate trusts and foundations
- medicines companies
- payment for services
This information can often be determined from looking at their annual report.
Scarcity of funding often encourages a culture in health consumer organisations of ‘doing a lot with little’. Even an organisation with a comparatively small budget can be an equal partner in a relationship with a medicines company.
Types of work performed by health consumer organisations
Some health consumer organisations focus on a specific health condition while others work across a range of health conditions. Some are peak bodies (state or national) and others are alliances of several health consumer organisations. There may be more than one organisation focusing on one condition so it is best to be aware of other health consumer organisations working in the same health area.
A health consumer organisation may focus on:
- patient support, such as face-to-face support groups, telephone support lines, family respite camps,
- providing information about a health condition, and treatments and services available,
- advocacy on behalf of people living with a health condition, and/or
- research, including funding, conducting and encouraging research into a health condition.