Let the children go — advocacy for children in detention by the Royal Australasian College of Physicians

Regardless of other considerations, the health perspective requires that the detention of asylum seeker children must stop now

Nelson Mandela’s words, “there can be no keener revelation of a society’s soul than the way in which it treats its children”, should give Australian immigration policymakers pause.1 The evidence is in, and it’s irrefutable — Australia’s detention of asylum seekers is harmful to both adults and children, and children are often scarred for life by their experiences.2,3 Detained children experience significant language and developmental delays, sleep and behaviour disorders, mental health conditions (such as post-traumatic stress disorder, depression, anxiety, self-harm and suicidality), and inadequately treated physical health conditions at greater rates than refugee children who are not detained.2–4The recent Australian Human Rights Commission report, The forgotten children, found that 85% of parents and children reported negative effects on their mental health while in detention. In the same report, clinician-rated assessments of children found 34% had mental health problems that would warrant referral to hospital-based outpatient mental health services for treatment, compared with 2% of children in the general Australian community.4Exposure to parental depression, helplessness and uncertainty, compounded by family separation and incarceration in harsh and unstimulating environments, are all contributory factors.

The Royal Australasian College of Physicians (RACP) has been publicly opposed to the detention of children for more than 12 years. Over the terms of successive governments from both sides of politics, the RACP has consistently advocated, both in the media and directly to decisionmakers, the release of all children and their families from immigration detention, and recommended legislative change to end immigration detention once and for all. In May, the RACP released a comprehensive position statement on refugee and asylum seeker health. Physicians from across our specialties have reviewed the facts, both through firsthand visits to detention centres and by close analysis of the health data. Our position is this: it is imperative that detention of asylum seekers for any length of time must be stopped. There are no circumstances, from a health perspective, in which conditions in detention are acceptable.

    “There are no circumstances, from a
    health perspective, in which conditions in
        detention are acceptable”

Public opinion supports the current approach to immigration policy, with a recent poll indicating that 34% of the community considers the government is taking “the right approach”, while 27% believes it is “too soft”.5 But health professionals have a responsibility to hold policymakers to account. We suggest public views are fed by fear and systematic exposure to misinformation about “illegals” and “queue jumpers”. If we were genuinely interested in preventing drowning, we would work with our neighbours to develop a regional solution that focused on causes, not just deterrence.6

Our legal commitments — and our moral responsibilities

Australia is the only country where mandatory detention is enshrined in legislation. In 2013, the United Nations Human Rights Committee concluded that the arbitrary and protracted nature of detention by Australia, combined with the difficult conditions of detention, were “cumulatively inflicting serious, irreversible psychological harm” upon detainees. Australia was found to be in breach of Article 7 (prohibition of cruel, inhuman or degrading treatment) and Article 10 (requirement that persons deprived of their liberty be treated with humanity and respect for their inherent dignity) of the International Covenant on Civil and Political Rights.7 The RACP was therefore deeply disappointed with the government’s response to The forgotten children report; RACP Fellows had helped to prepare this sobering account of the ongoing harms of detention. The appropriate response would have been immediate action to release all children.4

There has been welcome progress, such as the closure of the remote detention facilities on Christmas Island and the widespread release of children and families over the past 6 months, albeit on temporary or bridging visas. Notably, these visas do not relieve the fear of being returned to life-threatening circumstances, and have been shown to have their own negative mental health impact.8 Despite the progress, 1848 people, including 124 children, remained detained in onshore facilities as of 31 March 2015, and 1707 people were detained offshore, including 103 children on Nauru. On average, people still spend 394 days in detention.9 The current asylum seeker system costs Australian taxpayers more than 3 billion dollars annually.10

Mahatma Ghandi said, “In a gentle way you can shake the world”. We encourage doctors to write to their local members of parliament, and make their views known in as many forums as possible. Asylum seeker health is not about politics, but about our humanity. We are optimistic that, with continued focus on the negative health impacts of this policy, public opinion will eventually turn, and detaining children who are seeking asylum in our country will become a policy of the past.

The Forgotten Children: National Inquiry into Children in Immigration Detention 2014

In violating children’s basic rights, we seriously compromise their mental and emotional health and normal development

No country other than Australia mandates indefinite closed detention of children arriving on their shores. By the end of January 2014, over 1000 children in Australia had been held in immigration detention for more than 7 months on average.1 On 3 February 2014, as President of the Australian Human Rights Commission, I announced a national inquiry into children in immigration detention.

The Inquiry investigated the policy and practice of detaining asylum seeker children which had been supported by both Labor and Coalition governments over an 18-month period, from January 2013 to September 2014.

    “Medical professional organisations …
    have accordingly taken a public stance
        against mandatory detention”

The aim of the Inquiry was not to reconsider the Human Rights Commission’s already formed legal views of immigration detention, but to investigate how the health, wellbeing and development of children was being affected by life in detention. Through visits to 11 different detention centres, the Commission conducted interviews with 1129 children and parents in immigration detention in Australia, using a standardised questionnaire. The Commission also conducted 104 interviews with people in the community who had formerly been detained; received 239 submissions; held five public hearings with 41 witnesses, and obtained data from the Department of Immigration and Border Protection.

A crucial aspect of the Inquiry was the involvement of internationally recognised medical experts as consultants who accompanied Inquiry staff on each of the detention centre visits, and submitted expert reports of their observations.2 The medical professional community also made important contributions through the submissions process and the public hearings.

The Commission provided its report The Forgotten Children: national inquiry into children in immigration detention 2014 to the government on 11 November 2014. The Attorney-General tabled the report in Federal Parliament on 11 February 2015. The report is available online.3

The Forgotten Children report provided unprecedented direct evidence of the negative effect of immigration detention on children. Prolonged detention was clearly and unequivocally shown to have serious negative effects on the mental and emotional health, as well as the development of these children. The report contained the following findings:

The mandatory and prolonged immigration detention of children is in clear violation of the Convention on the Rights of the Child, including Article 24(1) which provides that all children have the right to the highest attainable standard of health.4
Detention creates and compounds mental health problems in children. Children in immigration detention have significantly higher rates of mental health disorders than children in the Australian community. Clinical assessments by doctors working in detention facilities revealed that 34% of children in detention had moderately severe to very severe mental health problems. Less than 2% of children in the Australian community have problems at this level.
There are high rates of self-harm by children in detention. In a 15-month period, from January 2013 to March 2014, 128 children in detention, aged 12 to 17 years, engaged in acts of self-harm, including attempted suicide. One 15-year-old boy in detention in Darwin told Inquiry staff, “I don’t feel safe because of my own self”.
Children are detained in close confinement with adults who suffer high levels of mental illness. Thirty per cent of adults detained with children have moderate to severe mental illnesses.
Children have been exposed to unacceptable levels of violence in detention. From January 2013 to March 2014 the following incidents were reported from detention centres where children were held:
- 207 incidents of actual self-harm
- 210 incidents of voluntary starvation (27 of which
  included children)
- 436 incidents of threatened self-harm
- 57 serious assaults
- 233 assaults involving children
- 33 incidents of reported sexual assault (the vast majority involving children).
The harsh and cramped living conditions on Christmas Island created particular physical illnesses among children. On Christmas Island many children shared a tiny room of 2.5 × 3 metres with up to four people.
The children detained indefinitely in Nauru are suffering from extreme levels of physical, emotional, psychological and developmental distress. While the Inquiry team were not able to visit Nauru, the evidence we received about the conditions through submissions and testimony at public hearings was shocking. We received reports that children and their families are being detained in very hot and cramped conditions in vinyl tents, with no privacy or air-conditioning, serious water shortages and problems with cleanliness and hygiene. The Inquiry also received evidence from staff working in Nauru of incidents of harassment, bullying and abuse of children. The recent report from Philip Moss into the conditions in the detention centre in Nauru confirmed many of the Commission’s concerns.5

Key recommendations of the report are:

That all children and their families in detention in Australia and Nauru be released as soon as possible.
That legislation be enacted so that children may only be detained for as long as is necessary for health, identity and security checks.
That no child be sent offshore for processing unless it is clear that their human rights will be respected.

The finding that detention causes harm to the mental health of children is not new. The Commission’s report following its first National Inquiry into Children in Immigration Detention, released in 2004, found that children in immigration detention for long periods of time were at high risk of serious mental harm.6 Since that time successive Australian Governments, and the Australian public, have been on notice about the human cost of Australia’s mandatory detention system.

Despite the recent detailed findings and recommendations in the Forgotten Children report, at the end of March 2015 there were still 124 children in detention in Australia, and 103 children detained in Nauru.7 There is an urgent need to remove these children from these detention environments which are causing them harm.

Medical professionals who have witnessed the health impact of detention first-hand can and do provide powerful evidence against the policy of mandatory detention. Medical professional organisations including the Australian Medical Association, the Royal Australian and New Zealand College of Psychiatrists and the Royal Australasian College of Physicians have accordingly taken a public stance against mandatory detention.

Public criticism from organisations like these helps to build momentum towards a future in which Australia no longer subjects vulnerable children to the harm documented in the Forgotten Children report.

Talking About The Smokes: a large-scale, community-based participatory research project

Community-based “participatory research” (PR) is desirable because it fosters partnerships between a community and research agencies, enabling inclusivity, interdependence and democratic knowledge production to reduce health inequalities.1–4 Support for PR is particularly strong when research involves indigenous peoples5,6 as it promotes self-determination, creating more transparent and equitable conditions for knowledge creation and benefit sharing.3,7 PR as a methodology may range from being consultative5 through community-directed8 to community-controlled, where community groups exercise the highest expression of autonomy over research, assisted by research institutions.9

In Australia, one Aboriginal human research ethics committee (HREC) will only approve a research project when “there is Aboriginal community control over all aspects of the proposed research”, including design, data ownership, interpretation and publication.10 Other approval criteria include the betterment of Aboriginal peoples’ health, cultural sensitivity and a capacity to benefit. These are hallmarks of PR, and there are now World Health Organization guiding principles specific to indigenous peoples,7 along with guidelines,11,12 joint statements,13–15 and a systematic review,1 to influence PR design and complement guidelines for ethical research involving Indigenous Australians.16 The WHO principles for PR reflect experience in various countries and provide guidance on the joint management of research by research institutions and indigenous peoples. These principles are described as being “applicable everywhere and to all fields of research involving Indigenous Peoples”.7

In this supplement, we report on the Talking About The Smokes (TATS) project, a large-scale PR collaboration between Aboriginal and Torres Strait Islander peoples, their representative bodies, and researchers. This national research project was initiated in 2010 to examine pathways to quitting smoking and the impact of tobacco control policies in the Aboriginal and Torres Strait Islander population. The TATS project is one of many studies within the International Tobacco Control Policy Evaluation Project (ITC Project) to follow nationally representative cohorts of smokers, to measure psychosocial and behavioural impacts of tobacco control policies.17 However, it is the first to sample only a high-prevalence subpopulation within a country.18

In this article, we describe the TATS project PR methodology according to the WHO guiding principles, to assist others planning large-scale PR projects.

Background

In 2012–2013, 42% of the Aboriginal and Torres Strait Islander population aged 15 years or older were daily smokers — 2.6 times the age-standardised prevalence among other Australians.19 Australian governments aimed to halve the Indigenous Australian smoking rate by 2018 (from the 2009 baseline) through a range of Indigenous tobacco control initiatives.20 Funded by the Australian Government in support of these national initiatives, the TATS project was conducted mainly through Aboriginal community-controlled health services (ACCHSs).

ACCHSs provide comprehensive primary health care services to more than 310 000 people (2010–11), with nearly 80% identifying as Aboriginal and/or Torres Strait Islander. The 150 ACCHSs located across Australia are almost entirely Aboriginal-controlled, with a governance structure comprising elected members of the Aboriginal community.21 Although funded largely by the Australian Government,21 they are independent not-for-profit agencies, established by Aboriginal leaders from 1971 in response to significant unmet health needs.22 ACCHSs were involved in the TATS project partly because those most affected by the research outcomes were likely to be patients and staff of these services, but also because of the representativeness of ACCHSs at the local community level, which enabled community control over the research process at each site.

The TATS project was led by the Menzies School of Health Research (Menzies) in a formal partnership with the National Aboriginal Community Controlled Health Organisation (NACCHO). The research team included researchers from Menzies, the Centre for Excellence in Indigenous Tobacco Control, Cancer Council Victoria, two state affiliate organisations of NACCHO (Affiliates) — the Queensland Aboriginal and Islander Health Council (QAIHC) and the Aboriginal Health and Medical Research Council of New South Wales (AH&MRC) — and researchers representing NACCHO. The researcher from Cancer Council Victoria is an investigator on other ITC Project surveys. Project support staff were employed at Menzies and NACCHO, and at 34 local ACCHSs as research assistants (Box 1).

The project used two waves of survey data in 35 locations (the 34 ACCHSs and a community in the Torres Strait). In the first of these waves, 2522 community members and 645 ACCHS staff were surveyed from April 2012 to October 2013. The research methods and baseline sample are described elsewhere.18

Methods

The WHO guiding principles were adapted from their narrative form into a reporting framework in which the text (verbatim) was rearranged into seven themes with numbered subsections (Appendix 1). A condensed version of the framework is shown in Box 2. This framework was used to assess the PR process in the TATS project. Anticipated and unanticipated benefits of the project were sourced from the research protocol, ethics submissions and anecdotal reports from ACCHSs.

Throughout this report, links to the numbered subsections of the framework are shown in parentheses. The framework and the WHO principles refer to indigenous peoples as those “with clearly identifiable community and leadership structures … and a significant political voice”.7 Our references to Indigenous peoples include Aboriginal peoples and Torres Strait Islanders and their representative bodies, such as NACCHO, ACCHSs and Affiliates — all independent but related entities.

Permission to use the framework was provided by the lead author of the WHO principles (Harriet Kuhnlein, Founding Director, Centre for Indigenous Peoples’ Nutrition and Environment, Quebec, Canada, personal communication, February 2014).

Results

The PR approach adopted by the TATS project is described using the seven themes from the adapted framework (Box 2).

1. Consultation and approval

The TATS project was initiated as a result of conversations between three researchers (from Menzies, Cancer Council Victoria and the Centre for Excellence in Indigenous Tobacco Control), one of whom is Aboriginal, and was influenced by the usefulness of ITC Project surveys in other settings. A decision was made to invite Aboriginal organisations as partners. Initial contact with these organisations was made at a meeting of all Affiliates, after which two researchers (from QAIHC and AH&MRC) agreed to participate. In view of the national significance of the proposed research and synergies with national tobacco control policy and community priorities, NACCHO proposed a partnership with Menzies, which was accepted, and NACCHO representatives joined the research team (1.1–1.5).

2. Partnerships and research agreements

Several types of research agreements, some legally binding, were made between the partners (Box 3). The earliest agreement comprised a memorandum of understanding (MOU) initiated by NACCHO to guide the shared development of the research protocol and funding proposal with Menzies, and to ensure consistency with the research and policy priorities of both institutions (2.1). Other agreements comprised two funding contracts between Menzies and the Australian Government and a subcontract with NACCHO, the research protocol, site agreements and consent forms.

Other research team members chose not to make legal agreements between their employers and Menzies; their involvement was sustained by common interests and a history of existing relationships between individuals. Researchers from QAIHC and AH&MRC received endorsement from the Aboriginal leadership of these bodies to participate as individuals in the project.

The research team collaboratively developed the research protocol, with review by the Project Reference Group (PRG), and this was endorsed by the NACCHO Board 18 months after the MOU was signed. The protocol articulated the roles and responsibilities of all partners, the agreed conditions and all steps of the research process (2.2–2.6). Menzies was the administering agency and project manager, and NACCHO acted as advisor for responsible research conduct, communication and coordination involving ACCHSs, in collaboration with other research team members.

Local ACCHSs were informed about the TATS project and the NACCHO–Menzies research partnership and invited to express an interest in participation, pending funding. Although ACCHSs had minimal involvement in the development of the research protocol, it formed the basis of the individually negotiated site consent forms and site agreements (Box 3). All parties to these agreements committed to the successful completion of the research, but could withdraw at any time with notice (2.7–2.8).

3. Communication

Lines of authority within participating Aboriginal organisations were respected; the project staff communicated with managers, chief executive officers and boards where appropriate (Box 1). The key to coordination was the employment of project staff to facilitate engagement between the research team and sites using existing ACCHS sector networks, communication between Menzies and NACCHO, and reporting to the NACCHO Board (3.1).

The NACCHO Board approved the structure, role and membership of the research team and the PRG. Appointments to the PRG were facilitated by NACCHO and comprised Aboriginal peoples and Torres Strait Islanders from all Affiliates and a member of the NACCHO Board as Chair. This ensured the PRG could represent ACCHSs from all jurisdictions. The PRG provided advice, monitored the ethical conduct of research, and assisted in prioritising data analysis (3.2). Members of the PRG were also involved in the interpretation of results, increasing the involvement of Indigenous peoples in this part of the research process.

Communication responsibilities were articulated in the research protocol, funding agreements and site agreements, and included the release of progress reports and a national knowledge exchange forum involving all sites (3.3–3.4).

4. Funding

The initiating three researchers procured establishment funding to negotiate and make agreements with key stakeholders and develop the research protocol and instruments. Thereafter, all research team members had oversight of project fund seeking, as the establishment of partnerships preceded the acquisition of these funds (4.1).

To assure mutual interests, primary contract negotiations involving Menzies and the funder were synchronously aligned with the development of the subcontract with NACCHO. All site agreements were also contracted with Menzies, which funded ACCHSs to undertake local surveys by employing research assistants (4.2) (Box 3).

5. Ethics and consent

Approval from three Aboriginal HRECs and two other HRECs with Aboriginal subcommittees was secured across four jurisdictions before finalisation of the research protocol and signing of the funding contract with NACCHO (5.2–5.3). The MOU, ethics applications and research protocol committed the parties to adhere to ethics guidelines16 and conform to NACCHO data protocols.23 These protocols were developed and endorsed by the ACCHS sector to affirm the importance of Aboriginal peoples and their representative bodies acting as owners and custodians of their own data (5.1, 5.4, 5.7).

Three levels of consent were sought and obtained: Aboriginal collective consent at the national level through NACCHO;24 local community collective consent from each individual ACCHS and the Torres Shire Council (representing the Torres Strait community, as there is not a local ACCHS); and informed consent procured from individual survey participants by research assistants (5.5) (Box 2).

Research assistants had some control over how data would be collected in their community, thereby accommodating cultural and geographic diversity across sites. The consent of study participants was obtained in writing using consent forms approved by the research team as per ethics guidelines (5.6).16

6. Data

Primary contract negotiations stated that intellectual property rights to products arising from the project were vested in Menzies. Through subcontracting, NACCHO and individual ACCHSs were granted a perpetual licence to use, adapt and publish project outputs in accordance with the research protocol and, therefore, the NACCHO data protocols (6.1). The primary funding contract, NACCHO subcontract and research protocol stipulated that raw (unanalysed) data collected from ACCHSs remained the property of the specific ACCHSs “when considered both in isolation and at a national level”. Site agreements clarified that: the collected data were to be used by the research team only as outlined in the research protocol; release of information identifying ACCHSs required their review; and publication of aggregated national results required review by NACCHO (or Affiliates where jurisdictions were identified) (6.2).

Confidential information was protected using a password-protected database, with separate storage of a unique identifying code available only to approved staff and research team members (6.3). This code was necessary for the re-identification of participants in the follow-up survey a year after the baseline survey.

Research agreements ensured that data analyses and interpretations in publications and conference presentations were agreed on by the research team or through joint meetings with the PRG, and then reviewed by NACCHO before submission for publication (6.4). Authorship of manuscripts was negotiated based on international criteria,25 with capacity for Indigenous members of the research team, PRG or project staff, or Indigenous research assistants, to be authors (6.5). ACCHSs were also provided with summaries of their local data in clear language and in formats enabling their independent use (6.6).

ACCHSs’ ownership of their unanalysed data meant that new research requests unrelated to the original agreement would require endorsement from the relevant ACCHS or, on national matters, the NACCHO Board and the PRG (6.7).

7. Benefits of the research

Anticipated research benefits were identified in all research agreements and other information provided to ACCHSs and participants (7.1) (Box 4). No commercial benefits were considered likely (7.2). The recruitment of Aboriginal and Torres Strait Islander peoples to the PRG and the employment of three project staff at NACCHO and 101 local research assistants in ACCHSs helped build individual Indigenous and organisational capacity (7.3) (Box 4). All except seven of the research assistants were local Indigenous people. Funding was provided to ACCHSs for these appointments and to compensate survey participants (in the form of vouchers). Anecdotal benefits to survey participants and services were freely communicated (Box 5).

Discussion

The TATS project exemplifies community-directed research,8 where participation between partners is democratised. While the design of the TATS project was shaped by the institutional, policy and research experience of Aboriginal organisations, research agencies and individual researchers, it closely mirrored the WHO’s PR principles. The TATS project involved 34 ACCHSs conducting baseline and follow-up surveys, making it one of the largest PR projects in Australia. We can affirm that large-scale PR involving vulnerable populations is achievable.

When communities and researchers seek solutions to the same health problems, negotiating this interdependence into a research partnership can help community researchers feel like they are “doing meaningful public health work, not just conducting research”.26 Ultimately, PR relies on forming the right partnerships.27 The relational ethics of the TATS project were negotiated through pre-existing trust between individuals from partner organisations and the individual relationships that developed during the project. They were also negotiated formally through research agreements that embedded community “ways of knowing” and Indigenous ownership over products such as research data.5 This meant that ACCHSs retained autonomy over their collected local information, including into the future — an outcome normally considered challenging.6 Establishing partnerships can take months, particularly where legal agreements are negotiated. Securing an establishment grant for TATS project preparatory work, as well as being transparent about funding uncertainty and research time frames, allowed time for partnerships to develop.

Through NACCHO, the project received the approval and involvement of the Aboriginal health leadership of the ACCHS sector nationwide. Research assistants recruited by ACCHSs from the local population enhanced trust and increased participant recruitment, as did the provision of financial compensation. These strategies are known to increase research response rates in minority populations.26,28,29 Aboriginal peoples and Torres Strait Islanders were employed and involved in all aspects of the project, from conception and design to analysis and dissemination. While the WHO principles promote active Indigenous involvement, including self-determination over the degree of research involvement, advice on building Indigenous capacity through Indigenous employment and career development is more explicit in other guidelines.13,1 5

We did not attempt to quantify congruence of our project with PR principles,1,8 but the framework we adapted served to structure and focus our reporting “beyond the rhetoric”,5 illustrating applied PR principles in large-scale community-based research. Investment in a research process that is participatory, in both “methodology and method”, is rewarding and sometimes more important than the outcome.30 Participation can empower communities and is recognised as an outcome in itself.31 Community participation in research delivers social and cultural validity when inquiries are aligned with the needs and priorities of those being researched, and better external validity of findings for generalisability.3 Achieving this through PR may be more costly in the short term but in the long term builds health equity32 and facilitates translation of research into policy.3

PR is common but there is no single PR strategy, as self-determined community priorities are unique.4 Sharing our strategies may encourage others to adopt similar research models involving indigenous peoples for equitable knowledge creation, and to build stronger future partnerships.

1 Governance structure of the Talking About The Smokes project

NACCHO = National Aboriginal Community Controlled Health Organisation. ACCHS = Aboriginal community-controlled health service. CEO = chief executive officer. ITC Project = International Tobacco Control Policy Evaluation Project.

2 Condensed framework: guiding principles for participatory health research involving research institutions, Indigenous peoples and their representative bodies*

Theme

Subsection

The guiding principles refer to:

1. Consultation and approval

1.1–1.3

Initiation of research and making contact

1.4–1.5

Approval for the research to proceed

2. Partnerships and research agreements

2.1–2.4

Equality of research relationships, joint preparation of a research agreement and research proposal

2.5–2.6

Development of agreed research processes

2.7–2.8

Joint obligations towards the research

3. Communication

3.1

Clarification of, and respect for, the lines of authority of the partners

3.2

Committee selection by Indigenous peoples (for communication, facilitation and promotion); the committee should represent all relevant community-controlled organisations

3.3–3.4

Maintenance of communication, including progress reports, results and implications of the research

4. Funding

4.1–4.2

A joint commitment to fund seeking, and agreement of sources in advance

4.3

Research institutions’ obligation to ensure Indigenous peoples are involved where resources or capacity are lacking

5. Ethics and consent

5.1–5.2

Respect for ethical guidelines, approval from human research ethics committees and Indigenous-controlled ethics committees

5.3

Research commencing only after ethics approval is received and signed agreements are finalised

5.4

Research conforming to additional protocols of the Indigenous peoples involved

5.5

Consent for research at various levels: individual (study participants), representatives of Indigenous peoples, and the umbrella Indigenous organisation

5.6

A jointly agreed consent-seeking process

5.7

Umbrella Indigenous organisation demonstrating the collective consent of Indigenous peoples

6. Data

6.1–6.2

Intellectual property rights, benefit sharing and boundaries pertaining to information use

6.3

Confidentiality and limiting access to research data

6.4

Joint review and interpretation of data before publication

6.5

Authorship or acknowledgement of participants in joint research

6.6

Formatting data and reports for independent use by Indigenous peoples

6.7

Indigenous ownership of data and authorisation for further use

7. Benefits of the research

7.1

Obligation for research to provide short-term and long-term benefits for Indigenous peoples, including provision of health care where lacking

7.2

Disclosure of potential economic benefits of the research

7.3

Research benefits including training, employment, general capacity building and improved health status or services (or prospects for such improvement)

* Adapted from the World Health Organization, 2003.7 See Appendix 1 for the full framework.

3 Types of research agreements used in the Talking About The Smokes (TATS) project

Research agreement

Function

Signatories

Memorandum of understanding

Commit parties to developing a research partnership

Menzies, NACCHO

Funding contracts

Fund both the establishment phase and the full TATS project

Menzies, Australian Government Department of Health and Ageing

Subcontract

Fund NACCHO project staff to deliver TATS services

Menzies, NACCHO

Research protocol

Document the agreed research processes (goals, planning, design, methods, consent, data collection, analysis, interpretation, dissemination and reporting)

Research team members (and endorsed by NACCHO Board)

Site agreements

Articulate the terms of engagement including roles and responsibilities, and provide funding for employment of research assistants and purchase of consumables

Menzies, ACCHSs

Site consent forms

Document collective consent of the community served by the ACCHS

Menzies, ACCHSs

Survey consent forms

Document individual consent

Survey participants, research assistants

Menzies = Menzies School of Health Research. NACCHO = National Aboriginal Community Controlled Health Organisation. ACCHS = Aboriginal community-controlled health service.

4 Benefits of the Talking About The Smokes project

Benefits

Explanation

To study participants

Those identified as having an interest in quitting smoking were referred to health personnel in ACCHSs for quit support
Financial compensation for time spent doing surveys

To health services

Provision of local information about smoking and tobacco control encouraged ACCHSs to develop:
- more effective local quit initiatives (eg, quit smoking programs were newly established in some ACCHSs; health promotion activities were improved)
- workplace smoking policies
Funds were provided for the employment of local staff on the project

Towards employment

Employment of local Indigenous and non-Indigenous Australians:
- 101 research assistants across 35 sites, with all but seven being Aboriginal or Torres Strait Islander; three NACCHO staff (one of whom was Aboriginal); two Menzies staff (one of whom was Torres Strait Islander)
Some research assistants were offered ongoing employment in ACCHSs

Enhancing research capacity

Onsite training of research assistants by regional coordinators, which was also sometimes attended by other ACCHS staff
ACCHSs’ ownership of their survey data, enabling further analyses at each service’s discretion

Towards partnerships

Collaborative relationships between partners in the research sector, the Aboriginal community and communities in the Torres Strait

Towards Indigenous participation

Involvement of Indigenous peoples in all aspects of the project

Towards improved knowledge exchange

Results from the project will inform improved tobacco control activities and policies to reduce the harm caused by smoking
This knowledge exchange will be enhanced by the involvement of the potential users of this research, especially ACCHSs, throughout the project

ACCHS = Aboriginal community-controlled health service. NACCHO = National Aboriginal Community Controlled Health Organisation.

5 Quote from a project site illustrating the benefits of the Talking About The Smokes project

“In our 2 years doing the Talking About The Smokes project, [our] Aboriginal Corporation has been able to engage with over 125 community members (smokers!!), allow a staff member to get paid, and allow a staff member to be in a leadership role in the community. These results from the 2 years will now feed into the Tobacco Action Group that is newly formed for [our] region. We supported World No Tobacco Day last year, with over 60 community members attending, and hope for a repeat this year.”

Matt Burke, OAM, Chief Executive Officer, Mungabareena Aboriginal Corporation, Wodonga, Victoria, March 2014 (with permission).

[Comment] Offline: An irreversible change in global health governance

“We should have reacted sooner”, was Angela Merkel’s conclusion in her address to the World Health Assembly last week. She was speaking about Ebola, and she gave a sharp and public rebuke to WHO for its diffident performance. WHO’s decentralised structure can be a powerful advantage, she said, but it “can also impede decision-making and hinder good functioning”. Still, despite its weaknesses, “WHO is the only international organisation that enjoys universal political legitimacy on global health matters.” It should be supported.

[Correspondence] A premature mortality target for the SDG for health is ageist – Authors’ reply

The Millennium Development Goals (MDGs) for health, adopted in 2000, targeted substantial reductions by 2015 in a few MDG-selected causes: mortality in children younger than 5 years, maternal mortality, and mortality from HIV, tuberculosis, and malaria. The World Health Assembly resolution on non-communicable diseases (NCDs), adopted in 2012, targeted a 25% reduction from 2008 to 2025 in NCD mortality at ages 30–69 years.1

World No Tobacco Day reminds us of the desolating effects of smoking on health

In 2004 at Columbia University in New York, I worked with colleagues assessing the economic effects of heart disease in developing economies. I was invited to Washington, DC to address young economists from the International Monetary Fund (IMF) about tobacco as a contributor to vascular disease in sub-Saharan Africa and South America.

In DC, I was not among friends. Six young men in suits armed with data generated by mathematical models of intimidating complexity told me that tobacco was good for the [economic] health of evolving economies. It was easily grown; there was always a market; and governments loved it as a stable source of tax. Health consequences did not feature in their models — and so our meeting, though courteous, was brief.

Fast forward to Melbourne, August 2010, and the 63rd United Nations-auspiced international conference of non-government organisations (NGOs) working in developing economies on health and welfare. The theme was “Advance global health: achieve the millennium development goals”.

Despite the theme being like a slogan from the Chinese cultural revolution, the discussions were lively, open and constructive. Development was discussed from social, financial and political angles; but when tobacco was mentioned, quietness descended. Most representatives of the NGOs would say nothing bad about tobacco, because they had come to depend on tobacco companies’ largesse as governments, strapped by the global financial crisis, struggled for air.

We must resist fatigue and build on success

Tobacco is talked about so much that there is a serious risk of complacency, despite current estimates that one billion people will die from tobacco-related diseases this century.1 Many will die of cardiovascular disease, and in the developing world one-third of these will be people aged less than 65 years.2

But the tobacco epidemic contains stories of success even though set against a dismal global backdrop. World Bank modelling has shown that wherever tobacco is taxed, consumption falls, government revenue increases and tobacco farming can be changed to cultivate food.3 The World Bank model applies whatever the national income; raising taxes has worked in low- and middle-income countries such as South Africa, Egypt and Turkey.4

We must sustain the international response

The World Health Organization’s first international treaty has been the most successful international response to the global epidemic of tobacco-related diseases.5 As the culmination of about 50 years of policy work in relation to tobacco, the Framework Convention for Tobacco Control (FCTC)6 came into force in 2005 with 168 signatory countries. It was supported by many agencies including the IMF (yes), World Bank, UNICEF, several pharmaceutical companies and international health NGOs.7 The 2011 high-level United Nations summit on non-communicable diseases resulted in a specific commitment to reduce tobacco use through accelerated implementation of the FCTC.8 Now, 180 nations representing 89.4% of the world’s population are parties to the treaty.9

The FCTC has two arms. The first comprises demand-side controls covering pricing and taxation, and non-price tactics to protect people from others’ smoke and to regulate packaging and labelling, advertising and sponsorship. Supply-side measures — the second arm — are especially difficult to enact. Derek Yach, a principal contributor to the development of the treaty, writes on its tenth anniversary that

state monopolies led from China, Indonesia and India are poised to soon be the dominant manufacturers by volume of traditional tobacco products. Implementation of the FCTC will be tougher as state monopolies’ power grows — as it is in the very countries where prevalence remains extremely high or increasing.7

We must not rest on our laurels

Australia ranks highly in the success of its tobacco control strategies. The prevalence of smoking in Australia has fallen from 72% in men in 194510 to 15% now.11 The residual risks of smoking from years ago, together with those accruing to current smokers, mean there are about 15 000 tobacco-associated deaths a year in Australia.12 Plain packaging is having an effect, and social mores have changed.

From here, ensuring the availability of high-quality information about tobacco and smoking through social media to assist young people to make informed choices makes good sense. New products such as e-cigarettes should be viewed with scepticism, especially given the tobacco companies’ enthusiasm for them. Water-pipe smoking, for example, is enjoying a vogue in Australia13 and its health effects have been documented by the WHO.14 Support for smokers who wish to quit may not need to be extensive to be effective.

This is not an unwinnable battle.

Global advocacy for controlling the tobacco industry

Readers of the Medical Journal of Australia might be forgiven for assuming that the global impact of the tobacco industry has been greatly reduced. Australia is a world leader in tobacco control, based on its longstanding commitment to effective policies, and prevalence rates are declining rapidly. Globally, however, 30% of men and 6% of women still smoke. Further, projections suggest the internationally agreed target of a 30% reduction in smoking rates (base year: 2010) by 2025, established as part of the World Health Organization’s global non-communicable disease action plan, will not be achieved.1

Tobacco is a uniquely harmful product; two out of three smokers’ deaths result from their tobacco use, with a loss of an average 10 years of life.2 In the decade since the landmark WHO Framework Convention on Tobacco Control (FCTC)3 was adopted, around 50 million people, mostly men living in poorer countries, have died from using tobacco, and Big Tobacco continues to be very profitable.

The FCTC is a major advance in global tobacco control, although most countries have yet to meet their obligations under the convention. Most need to speed up the implementation of key components of the treaty: increased taxation, complete bans on tobacco advertising, promotion and sponsorship, and guarantees of smoke-free environments. Countries that have yet to ratify the FCTC, especially those where the tobacco industry is entrenched, ranging from Indonesia to the United States, should do so urgently. The FCTC alone, however, will not be enough to achieve a tobacco-free world, and will not stop the tobacco industry actively recruiting new smokers, especially women, a largely untapped growth market.

Time for action

It is time to acknowledge and act on the unacceptability of the damage done by the tobacco industry. How might we reverse the tobacco industry-driven pandemic? The Lancet recently published a series of three articles that discussed this question.4–6 In the first, we proposed the goal of a tobacco-free world by 2040; the sale of tobacco would be phased out over the next quarter of a century, although not prohibited.4 In this ambitious vision, less than 5% of adults would be using any form of tobacco in 2040.

The cause of the tobacco pandemic is the tobacco industry — lethal but still lawful — and its predatory efforts to maintain profits by exploiting markets in middle- and low-income countries.5 With its vast resources, the industry undermines and distorts tobacco policy in many countries. Some of its cynical efforts, however, have been countered in several high-income countries; for example, by plain packaging legislation in Australia,7 with similar legislation in Ireland and the United Kingdom following in March this year.8

Achieving a tobacco-free world by 2040 will require concerted and coordinated action at global, regional and national levels, especially in large countries such as China, where one in three of the world’s smokers lives. Although there is progress, the very close relationship between the tobacco industry and the Chinese government needs to be broken.6

Several countries have set their sights on essentially tobacco-free societies by 2025 (New Zealand9 and Pacific countries10) or later (Finland11 and Scotland12). These countries should be seen as models for regional and global efforts to achieve a tobacco-free world. Australia, for one, should also set a goal for reducing the prevalence of tobacco use to less than 5% by 2025. A strong development case can also be made for greater leadership from the United Nations in support of the WHO and its goal of a tobacco-free world by 2040. As tobacco is an impediment to human development, it would be appropriate for the post-2015 Sustainable Development Goals currently being discussed by the UN to include a strong tobacco control target, building on the work of the FCTC. The FCTC itself could be usefully amended to include a target date for phasing out the sale of commercial tobacco products.

Progress is possible — but needs investment

There are no serious downsides to adopting an ambitious goal for reducing tobacco use, as long as it does not deflect attention from the accelerated implementation of the FCTC. Indeed, focusing on tobacco has a multitude of benefits: it will support calls for improving health systems, make universal health coverage more attainable, and reduce the damage done to people throughout their lives. Ambitious goals have been instrumental in rapid improvements in other areas of public health, such as reducing the mortality of childhood diseases and HIV/AIDS. These positive trends, however, have required the investment of resources. Development agencies should extend the scope of their activities to supporting national tobacco control efforts, building on the contributions of Bloomberg Philanthropies and the Bill and Melinda Gates Foundation. Finally, the ability of countries to promote health, including through tobacco control policies, must be protected from the so-called “free” trade agreements currently under discussion.

The goal of a tobacco-free world is socially acceptable, technically feasible and could easily become politically practical. Current global anti-tobacco strategies are clearly insufficient. National and international leadership is urgently needed to counter the burdens on health and human development caused by the tobacco industry. In Australia, the priority is continuing increases in the taxation of tobacco products beyond the current 4-year cycle, increased investment in mass media campaigns, and actions targeted at vulnerable groups, including Aboriginal Australians and people with mental health issues. All Australians, including readers of this Journal, should further pursue their important advocacy role at home and abroad.

Tobacco-free generation legislation

The Tasmanian Public Health Amendment (Tobacco-free Generation) Bill 2014 is vital to improve health in Tasmania

Australia has led many initiatives against tobacco smoking, most recently cigarette plain packaging. Smoking costs this country some 20 000 lives annually, far more than alcohol, illicit drugs and road accidents combined, and indeed almost twice the deaths globally from natural disasters. The need for novel preventive supply-side tobacco legislation is paramount, and such a breakthrough now beckons.

In Golden holocaust, Robert Proctor highlights the insidious psychology used by the tobacco industry of telling adolescents that “kids don’t smoke”, so that they will do exactly that, just to appear adult.1 The tobacco-free generation (TFG) initiative seeks to undermine the rite-of-passage effect by progressively raising the minimum age at which retailers can legally sell people cigarettes.2 Tasmania is the first jurisdiction in the world to craft such mould-breaking legislation, although recent more limited moves in the United States raising the legal age to 21 years have proved highly successful.3

Tasmania’s smoking rates are considerably higher than the national figures, reflecting the state’s low socioeconomic status and historic lack of investment in evidence-based tobacco control strategies.4,5 Tasmania has experienced both the best and the worst of responses to the tobacco epidemic, the latter evident in an industry-orchestrated political corruption scandal in the 1970s, which brought down a government.6 However, more recently, the state has led some notable successes.7

Currently in Tasmania around 40% of younger men smoke, a proportion that has not fallen significantly for 10 years.8 Their outcomes in terms of mental illness, chronic disease and early death are dire, indeed worse than previously thought.9 The smoking burden to health services in economically challenged Tasmania is huge. In 2014, a novel Tasmanian initiative for adults banned tobacco in state prisons, and was introduced almost without incident. Thus, sensible and practical actions are feasible. The Tasmanian Legislative Council (upper house) has been a prime mover toward a smoking end game. Now, independent member of the Legislative Council Ivan Dean has introduced the Public Health Amendment (Tobacco-free Generation) Bill 2014, with strong public support and backing from a wide spectrum of health and professional organisations.

The TFG concept is straightforward. An under-18 law is presently in force; thus, already it is not permitted to sell tobacco to people born this century. That restriction will currently expire on 1 January 2018. However, with TFG legislation, the restriction will simply continue. Thus, retailers will never be allowed to sell cigarettes to anyone born this century, although the law will be reviewed after 3 and 5 years. Cigarettes will become a “so last century” phenomenon. With each passing year, there will be fewer slightly older smokers as role models and providers, and the “badge of coming of age” incentive (in Imperial Tobacco’s revealing phrase) diminishes in potency. Moreover, TFG legislation sends the important message that tobacco is too dangerous at any age; it could never now gain regulatory approval. Yet, because it is so addictive to young people it is not possible to remove tobacco from the market overnight without denying existing smokers. TFG legislation is the sensible and practical solution to this dilemma. Moreover, its thrust is on commercial agents who purvey tobacco, rather than on punishing their victims.

The TFG initiative has drawn intensive political lobbying by Imperial Tobacco, including closed meetings and meals with decisionmakers, in breach of article 5.3 of the World Health Organization Framework Convention on Tobacco Control (FCTC). The FCTC recognises the tobacco industry and its front organisations as “rogue” entities. So the legislation passes the “scream test”; the tobacco industry is really worried about this precedent. Some state politician objectors buy into Big Tobacco’s “nanny state” cliches, while others focus on allowing the disadvantaged to make their “own choices”. Such political correctness ignores the vulnerable young targets of industry marketing of its highly addictive product.

On 24 March 2015, the new legislation was debated in the Tasmanian Parliament. There was strong support, including from Attorney-General Vanessa Goodwin, for its aspiration, with a committee established to address workability. In fact, the proposal ticks all the political boxes: it is finance free; the machinery needed is in place and working well (98% of licensed tobacco retailers obey the law); 69% of the community and 88% of 18–29-year-olds support the TFG initiative;10 it fits Tasmania’s “clean and green” image; it will have some quick wins, especially among young pregnant women and their babies; and the longer-term gains for community health and government finances will be enormous.

The current Tasmanian Government has declared that it wants the state to be the healthiest in Australia in 10 years — to achieve that it needs the TFG legislation enacted. The rest of world will soon follow another bold Australian initiative against the global tobacco nightmare.11

The verdict’s in: we must better protect kids from toxic lead exposure

The National Health and Medical Research Council (NHMRC) today released new guidelines aimed at reducing children’s harmful exposure to lead. Soil, dust, water and air-based exposure to lead can interfere with the development of the nervous systems and cause behavioural and developmental problems.

The effects of lead exposure are greatest in unborn children and those aged under five years, when their growing brains absorb high levels of calcium. Because lead (Pb2+) mimics calcium (Ca2+), children in lead-rich environments absorb larger amounts of lead in place of calcium.

The NHMRC is lowering the level of lead in children’s blood at which the sources of exposure are to be investigated, from ten to five micrograms per decilitre. This marks an important milestone in Australian public health; maximum blood lead levels for Australian’s children were last lowered in 1993, from 25 to ten micrograms per decilitre.

Still, reaching this new, more protective intervention level of five micrograms per decilitre has taken far too long – and the NHMRC’s message doesn’t go far enough to protect children.

More cautious than overseas regulators

The conclusions from the review that formed the basis of the new guidelines indicate the NHMRC may be more interested in minimising the evidence linking low-level lead toxicity than minimising widespread exposure to a widely recognised poison.

The NHRMC is far more cautious than other international scientific advisory panels. The NHMRC concluded that:

The evidence for health effects occurring as a result of blood lead levels less than ten micrograms per decilitre is less clear.

This conclusion contrasts starkly with the more strongly worded conclusions of other federal and international agencies. The United States Environmental Protection Agency report, for example, identified that childhood blood lead levels between two and eight micrograms per decilitre were causally related to decrements in cognitive function.

The United Nations Environmental Programme and the US Centers for Disease Control concluded that:

there is no evidence of a “threshold” or safe exposure.

The US National Toxicology Program reported that there was sufficient evidence to conclude that blood lead concentrations less than five micrograms per decilitre are associated with intellectual deficits (lower IQ score), academic disabilities, attention-related behaviours and problem behaviours:

National Toxicology Program Monograph on Health Effects of Low-Level Lead

Children in mining communities

The most heavily contaminated children are located in Australia’s premier lead mining and smelting towns where lead emissions in the air and dust remain far too high: Mount Isa, Port Pirie and Broken Hill.

Not surprisingly, approximately 50% of children under five years of age have a blood lead above five micrograms per decilitre. These levels are comparable with children from lower-income, rapidly industrialising countries.

To be fair, there have been significant recent financial investments to improve environmental quality in Australia’s major lead mining and smelting towns:

The upgrade of the smelter at Port Pirie will cost in excess of A$500 million.
The Mount Isa Mine will spend more than A$600 million on critical projects to improve environmental performance and reduce pollution by the end of 2016.
The New South Wales government funded a new environmental lead program for Broken Hill in early 2015 at a cost of A$13 million over five years.

Nevertheless, emissions from mining and smelting are the primary source of exposure in these communities, and local children’s blood lead levels signify a public health crisis.

A detailed plan to dramatically lower lead emissions and reduce the fraction of children who have blood lead levels above five micrograms per decilitre to zero by the year 2020 should be established immediately.

What about other Australian children?

The NHMRC was unable to estimate the average level of lead in Australian children’s blood outside of lead mining and smelting towns because there is no surveillance.

A 2008 study of a small cohort of children in Sydney showed 7.5% had a blood lead level more than ten micrograms per decilitre. If that number is remotely reflective of current exposures, we are failing to protect a very large number of children.

It’s critical to conduct a random survey of Australian children to quantify lead exposure, including enrichment of children from higher risk areas. These data are essential to develop policies to protect children and develop evidence-based policies.

The NHMRC report wrongly focuses on managing suspected cases of lead exposure, when, in fact, the key to preventing lead poisoning – and the reason for the dramatic reduction in blood lead levels over the past 40 years – is the universal reduction of ongoing contamination of lead exposure.

The NHMRC strategy is to target high-risk children. But unless there is a threshold, the high-risk approach will inevitably fail to protect the majority of those affected, albeit at lower levels. This is called the prevention paradox.

Lead-associated IQ deficits offer a compelling example. Targeting children who have a blood lead concentration above five micrograms per decilitre is efficient because it captures individuals most affected; the average lead-associated IQ loss for these children is about 6.2 IQ points.

However, in a six-year cohort of US children, those who have a blood lead concentration above five micrograms per decilitre account for fewer than three million (around 18%) of the 23 million IQ points lost due to lead toxicity.

So, by focusing only on high-risk children, we will ultimately fail to protect the majority of children who are affected adversely by lead and other toxins.

Towards cleaner air, soil and water

Early and effective intervention is important because the emerging evidence shows that the effects of childhood lead exposure do not remit with age.

Proper, long-term intervention won’t be easy, but reducing lead exposure is extraordinarily cost-beneficial. American economist Elise Gould estimated that for every US$1 invested in reducing childhood lead exposure from residential hazards, society would benefit from US$17 to US$221, a cost-benefit ratio comparable with childhood vaccines (US$1 to US$16.5).

So, now that interventions are expected to occur at the new lower level of five micrograms per decilitre, it is important that the relevant environment and health agencies promulgate better standards for the most likely sources of exposure in children: air, dust, soil and water.

Air and dust quality are the most important aspects for mining and smelting communities, because contaminant emissions form toxic depositions in yards, homes, and on surfaces that children interact with resulting in subsequent exposure.

In environments where legacy emissions have contaminated soils, it will be important to lower the acceptable standard for soils in domestic residences from 300 mg/kg to something that aligns with California’s acceptable level of 80 mg/kg to provide proper protection.

In these situations, exposure risks are well known and because they are modifiable, we have duty to act in terms of dealing with the ongoing contemporary sources of emissions.

However, these initiatives will not work without continued pressure to improve environmental standards along with significant efforts to ensure lead-safe messages are both current and constant.

Mark Patrick Taylor is Professor of Environmental Science at Macquarie University.
Bruce Lanphear is Professor of Children’s Environmental Health at Simon Fraser University.

This article was originally published on The Conversation.
Read the original article.

The old African queen lending a hand to improve health in Malawi

A doctor who founded a nation’s medical system, and the many lives of his ship

Not long after the explorer, medical missionary and anti-slavery campaigner, Dr David Livingstone, explored Lake Nyasa, now Lake Malawi, a wave of evangelising zeal saw the establishment of religious communities along the lake shore. One of those who went forth was an Anglican priest, Chauncy Maples. After 19 years, he was recalled to England to be appointed the Bishop of Nyasaland. It was on his return journey that the small vessel carrying him across the lake sank, and he drowned, weighed down by his bishop’s cassock.

Subsequently, as the plans for a large steamer were being drawn up to service the mission communities, the name Chauncy Maples was chosen for this vessel.

The building and rebuilding of the Chauncy Maples

The original plans for a 108-foot-long vessel were drawn in Africa, then repeatedly modified in Scotland by Henry Brunel, until the final version, a 127-foot-long design, was settled on.1

The ship was initially built in the inland shipyard of Alley and McLellan in 1899. This was a Glasgow company that supplied vessels in kit form to be exported to the colonies. During construction, the plates were bolted together rather than riveted, and once complete the entire ship was dismantled, the parts were galvanised, sorted into 3481 lots and then dispatched to the delta of the Zambezi River (Box 1).1

A workshop and slipway were created near where the Shire River leaves Lake Malawi, and there the ship was rebuilt and launched in 1901. The Chauncy Maples then began its first life as a missionary ship servicing the spiritual, educational and medical needs of mission communities along the shore of this 580-kilometre long lake. The routine was to drop off supplies at the missions and to then allow the treatment of patients over several days while the ship waited at anchor.

The pre-colonial health needs of Malawi and the development of a health service

One of the regular passengers on the Chauncy Maples was Dr Robert Howard, the first full-time doctor in Malawi. He recorded the illnesses afflicting the local populations and the missionaries, while establishing a string of lakeside medical clinics. His efforts directed toward disease prevention through good public health and hygiene probably prevented the collapse of the missionary settlements. Before his arrival, the annual death rate among the mission workers had been 10%, with a further 20% a year having to return to England due to illness.2

The local health needs were massive, with local infections as well as introduced ones that rapidly spread along trading and slaving routes. Dysentery, malaria, schistosomiasis and hookworm infestation accounted for much of the local disease burden. Diseases introduced from Europe and Asia included influenza, measles, smallpox and, later, tuberculosis. The sand flea, the cause of jiggers, a pruritic or painful skin infestation, rapidly followed trade routes to involve most of sub-Saharan Africa. Debilitating tropical ulcers were common, as were wounds from encounters with wild animals.2–5 Dr Howard was working in Malawi at the time when the transmission of malaria was first understood, and he introduced measures to control transmission.6,7

Dr Howard introduced measures to prevent malaria that we are all familiar with today. He pioneered a system of mosquito nets of a particular design (the Nyasa pattern), which the nursing staff were responsible for maintaining and replacing. Two pairs of socks were to be worn at night to protect the ankles from bites, and all old tins were to be buried before the wet season. He also introduced the practice of sprinkling pyrethrum powder on hot coals to fumigate mosquitoes in houses.3

Dr Howard and the Chauncy Maples both played pivotal roles in developing the health services of Malawi. Without their steamers, of which the Chauncy Maples was the largest and most important, the Universities’ Mission to Central Africa would never have been able to supply their hospitals. The ship also acted as a mobile hospital and means of patient transport. Ill patients were moved from their villages to hospitals such as the one on Likoma Island and could have their treatment initiated while travelling across the lake, somewhat akin to a modern air ambulance.2

The Chauncy Maples also made possible Dr Howard’s visits to villages to establish public health measures, including his antimalarial initiatives and the boiling of all drinking water, and to support the local “dressers” (the paramedics of their day), who, with a scattering of nurses, provided the hospital services along the shores of the lake.

After a decade of remarkable service, Dr Howard was made to leave his post because he married one of the nurses he worked with. Then, as now, bureaucracy was often unable to see past rigid rules to ensure the efficient delivery of service. It took 18 months to replace him. Dr Howard and his wife subsequently worked in the fledgling health system in Tanganyika.

The Chauncy Maples finds new roles

During World War I, the Chauncy Maples briefly saw service as a British armed patrol vessel before returning to her previous duties as a mission ship.

After 52 years of servicing the lakeside missions, the ship was withdrawn from service. A few years later she was purchased by a fishing company, fitted with refrigeration, and used as the mother ship of a fishing fleet on Lake Malawi.2 Then in 1965, she became a commercial passenger vessel that also functioned as a freighter. The old steam engine was removed and a diesel engine fitted. Her superstructure was modernised to accommodate more passengers, making her somewhat top-heavy.8 Finally, in 1990, after 89 years of service, the ship was laid up at Monkey Bay, on the shore of the lake, as something of an historic curiosity.

The Chauncy Maples returns to medical work

After such a long career, graceful retirement or the breaking yard would have seemed the obvious fates available to the ship. However, when resurveyed in 2009, the Chauncy Maples was felt to have at least 30 years of hull life left and, in 2012, she was hauled ashore to be refitted as a floating clinic ship (Box 2). Her modified superstructure has been removed, with the purpose of restoring the original elegant design. A new engine has arrived and a new propeller has been cast.

The refitting has been funded by the Chauncy Maples Malawi Trust, a charity registered in the United Kingdom.9 The engineering work is being carried out by the Portuguese company Mota-Engil, which has offered to fund the running costs for the completed vessel for its first 10 years back in the water. Other partners in the project are insurance and investment firm Thomas Miller and the Malawi government.

Various significant obstacles have had to be overcome, including having to procure a mobile crane in South Africa and drive it to the site. Currently, work is suspended while disagreements about ownership are resolved.

Hopefully, in the next couple of years, this 115-year-old ship will again be serving some of the medical needs of Malawi, a country with one of the shortest life expectancies and one of the highest rates of HIV infection. One in 200 pregnancies end in the death of the mother, one in 14 children do not reach the age of 5 years. Malawi has one of the highest ratios of population to doctors.10 As the road network is poorly developed, using the lake to transport clinical manpower and equipment will hopefully prove to be an efficient solution to some of this country’s medical needs.

1 The Chauncy Maples nearing completion in Alley and McLellan’s inland shipyard in Scotland in 1899, before its dismantling and transport to Africa1

2 Recent photo of the Chauncy Maples at Monkey Bay, Lake Malawi, being prepared to return to the lake as a clinic ship

Photo courtesy: Dean Smith