Health advocacy involves promoting the needs and rights of people who use health services. Advocates may also support people who make complaints about their treatment. These activities are often carried out by non-profit organisations which focus on particular illnesses or conditions, people living in a defined area or specific ethnic groups.
Health-advocacy organisations have operated since the 19th century. Many early groups focused on disability issues. These include:
- the Jubilee Institute for the Blind (established in 1890 – now Blind and Low Vision NZ)
- the Crippled Children Society (established in 1935 – now CCS Disability Action)
- the Intellectually Handicapped Children’s Parents’ Association (established in 1949 – now IHC).
Other major organisations which started in the 20th century include the Plunket Society (1907), the Cancer Society of New Zealand (1929), the Haemophilia Foundation of New Zealand (1958), the Heart Foundation (1968), the Mental Health Foundation of New Zealand (1977), Alzheimers New Zealand (1986) and the Breast Cancer Foundation (1994). In the 21st century new health advocacy organisations include the New Zealand Organisation for Rare Disorders (2000) and the Breast Cancer Aotearoa Coalition (2004), which is run by breast cancer survivors.
The Nationwide Health and Disability Advocacy Service was set up in 1996 and is funded by the Office of the Health and Disability Commissioner. It has community-based offices throughout New Zealand and is governed by an independent trust that is contracted to provide advocacy services. This state-funded service exists alongside the work of many non-governmental organisations engaged in health advocacy for people with particular health conditions and their families.
Twenty-first century health advocacy groups included those who campaigned for the legalisation of medicinal cannabis for use by those seeking pain relief. The Misuse of Drugs (Medicinal Cannabis) Amendment Act 2019 legalising the prescription of non-psychoactive medicinal cannabis to those who are dying or living with chronic pain came into effect in April 2020.
Local health advocacy organisations often develop with the support of national organisations. An example is the Christchurch Mental Health Education and Resource Centre (MHERC), which was set up in 1994 with the support of the Mental Health Foundation to connect mental health community groups and share resources. After the 2010–2011 Canterbury earthquakes it assumed particular responsibilities to support community-based mental health advocacy in the region and ran ‘building resilience’ and ‘wellbeing’ workshops. 1
Public health activists have also highlighted barriers to indigenous health and advocated for the provision of health services that are consistent with commitments to the Treaty of Waitangi. Responses to concerns about Māori health includes the development of iwi and marae-based primary health services in many parts of New Zealand and the development of health promotion material specifically aimed at Māori health consumers. Māori health advocacy has contributed to recognition by the Ministry of Health and district health boards (DHBs) that Māori organisations can make unique contributions to the health of their communities.
Some people group together to manage their health instead of always relying on medical professionals. Face-to-face mutual support is the most important purpose of these self-help groups. People argue that they have the right to make their own choices about health care by acquiring knowledge of their bodies and health conditions. Many self-help groups also aspire to change government health policies.
Though the general concept of self-help was not new, it gained fresh currency in the 1970s when feminist groups challenged the power of doctors and criticised the promotion of new drugs and medical technologies by pharmaceutical companies. In self-help groups women could learn about their bodies and alternative treatments, which could be managed themselves or by others. These groups could also empower women when they dealt with medical professionals.
Alternative health therapies and remedies are other forms of self-help which became more popular from the 1980s. Most remedies are classed as food products rather than medicines, allowing consumers to purchase them without a prescription.
Peer support services
In the early 21st century aspects of a self-help approach to heath has led to organised peer support services. This involves health consumers being trained to provide support for others with their condition, or to support parents or other family members of children with challenging health conditions.
In the mental health sector peer support services are increasingly receiving public funding. All DHBs in New Zealand now fund some form of peer support for mental health service users. Peer supporters have experience of a diagnosed mental health condition as well as being providers of a service to others. Most peer supporters work for community-based organisations that are often consumer-led. They complete training in peer support before they offer support to others and focus, not on ‘fixing’ people, but listening, ‘walking alongside’ their peers, and helping them to overcome challenges. 2
The internet is a source of direct information on health topics in the 21st century. A 2012 survey found that 50% of respondents used the internet for information on health services. Women were more likely to use the internet for health information than men and people aged 25 to 44 were most likely to use the internet to access information about health services.
Since the 1980s people using health services have often been described as consumers rather than patients.
As consumers, people have more clearly stated rights, and more input into their health care, than patients in the past. The 1987–88 commission of inquiry into the treatment of cervical-cancer patients at National Women’s Hospital in Auckland, conducted by Judge Silvia Cartwright, contributed to this change. Her report led to a number of initiatives, including an independent Health and Disability Commissioner, a national patient advocacy service and a code of patient rights.
Non-profit organisations, 21st century
By the 21st century a wide range of health disorders and sectors of the community were represented by non-profit organisations. Many were started by small groups of volunteers, usually with the aim of providing health or support services, and were maintained as informal organisations. Others gained funding from sources such as DHBs, charitable trusts or pharmaceutical companies, and grew into larger, more formal organisations with management boards and paid staff as well as volunteers. Some organisations were national in scope; others were regionally organised, especially if funded by DHBs.
Māori health providers, whether iwi or urban marae-based organisations, increasingly provide culturally appropriate preventative and primary health care for specific health consumers. From the 1990s community-based Māori providers have contracted with DHBs to provide health services on marae or in other community settings. Often their services respond to the needs of Pacific Islands health consumers as well as Māori. These services include well-child clinics and immunisation, but also cervical screening, smoking cessation and healthy eating programmes. Many of these clinics offer mirimiri (massage) and rongoa (traditional medicine).