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Eight useful things to know about community participation in healthcare

How can services become more responsive to their local communities, and how can they better tackle the social determinants of health?

These questions were recently addressed by La Trobe University’s Associate Professor Amanda Kenny, in a keynote speech to the recent Taking the Pulse Conference, convened by the Metro North Brisbane Medicare Local.

The conference followed six months of community and health services engagement by the Medicare Local, including a series of community forums and an online survey, designed to inform the organisation’s planning and to identify local primary healthcare needs.

Amanda Kenny told the conference that “there are two fundamental musts” for developing locally responsive healthcare that addresses the social determinants of health. She said:

“The first is that we must ensure that health professionals have a clear understanding and commitment to doing something about the circumstances in which people find themselves and change their focus to one of prevention. There is enormous goodwill, but on many occasions, health professionals aren’t well enough informed.

The second must, is that communities must be engaged in thinking about health design, planning, delivery and evaluation.”

Her speech, reproduced in full below, includes eight lessons from her work with communities who have been meaningfully engaged in health planning, design, delivery and evaluation.

***

Community participation and the social determinants of health

By Amanda Kenny

In 2008, at the launch of the WHO Final Report of the Commission on Social Determinants of Health, Dr Margaret Chan stated:

“The social conditions in which people are born, live, and work are the single most important determinant of good health or ill health, of a long and productive life, or a short and miserable one … the great discrepancies that occur along the social scale – from marginalization and deprivation to privilege and power – are the main reason for the vast differences seen throughout the world in health outcomes and life expectancy.”

Dr Chan stressed that while healthcare and lifestyles are important to health, it is the social environment that impacts on access to health services and influences the lifestyle choices we make.

The social determinants of health – such an academic phrase – but what we know without any doubt is that it is poverty, social isolation, gender, racism, disability, joblessness, lack of safety, homelessness, lack of affordable housing, lack of educational opportunities, failure to focus on early childhood development, and a myriad of other social factors that determine what it is to be healthy.

There really is a very simple message. We invest enormous funds in healthcare and medical treatment but we fail to address the major social problems that are at the root of ill health.

Amanda Kenny

The worldwide exponential growth in the ageing population, major increases in chronic conditions, and the rising incidence of mental health issues is coupled with rising costs, and major workforce maldistribution.

We don’t have sufficient numbers of health professionals in the right place and there is significant demand for health services. Health services are not coping with the demand, and services are posting significant financial deficits.

Without being totally gloom and doom, we haven’t see the worst yet as the full impact of the ageing of the baby boomer generation will emerge over the next two decades.

Over the last century we have made the most amazing gains. While we occasionally complain about our acute healthcare system, the reality is that by and large when people are acutely unwell we manage these acute episodes incredibly well.

Primary healthcare system needs help
However, there is increasing recognition that there are major problems with our primary healthcare system. We have a system that is characterised by complexity, navigation of the system is almost impossible, the system is characterised by numerous organisations, significant service duplication and there is little service integration.

Most importantly, there has been a one size fits all approach to healthcare delivery, with little acknowledgement that services must be locally responsive and must take account of the different needs of different people, the different circumstances that people find themselves in and the different geographic locations in which they live.

To me there are two fundamental musts if we are to develop locally responsive healthcare that has at its foundation a response to the social determinants of health.

The first is that we must ensure that health professionals have a clear understanding and commitment to doing something about the circumstances in which people find themselves and change their focus to one of prevention. There is enormous goodwill, but on many occasions, health professionals aren’t well enough informed.

The second must, is that communities must be engaged in thinking about health design, planning, delivery and evaluation.

In 1978, the World Health Organisation Declaration of Alma Ata was an international declaration on the importance of primary health as the key to achieving ‘health for all’.

Belated push for consumer and community participation
The importance of communities in health planning and decision making received overwhelming support, yet three decades later, governments are only just starting to drive the primary health agenda, with recognition that unless we focus attention on primary prevention and the social determinants of health our whole health system will implode.

Governments and health policy makers around the world are increasingly calling for the involvement of consumers and communities in health planning, service design, service delivery and evaluation.

International policy highlights meaningful community participation as key to a sustainable healthcare system that meets people’s needs.

However, while documents are full of aspirational statements there is little guidance on how meaningful community participation can be enacted at the grass roots level.

One of the most fundamental challenges in enacting community participation is the lack of a simple definition or understanding of what participation is.

The seminal work of Arnstein has been extensively cited and is useful to understand the multi-level nature of participation. Arnstein argues that whilst participation is theoretically the cornerstone of democracy, in reality, large sections of the community are powerless and are excluded from political and economic decision-making.

At lower levels of participation is consultation or information provision, and at higher levels is full citizen control that involves a major redistribution of power.

Discussions of community participation bring up deep divisions about participation; the goals, purpose and focus. Those who argue strongly for meaningful participation argue that participation can range from tokenistic consultation to a genuine means for people who are most affected by the social determinants of health to be active in constructing solutions to their problems.

Learning from experience
As the leader of a large community participation program, our interest in community participation is based on many years of work with people, particularly those from vulnerable and disadvantaged groups.

We are working in three communities where the health services have invested in a relatively long-term process to meaningfully engage communities in health planning, design, delivery and evaluation.

The process involves bringing people together to discuss issues in their community. We work, like research assistants for the community, in ensuring that their discussion can be based on evidence about their community.

Through a participatory action research process, the groups consider evidence about their community, looks at best practice and innovative models from Australia and internationally and using a workshop format work through the process of prioritising their health and social care needs.

An important component of this process is considering economic data and making decisions based on sustainable financial models. We have drawn this process from Scotland, where major findings indicate that when communities are given a range of health and financial data they come up with innovative solutions that are tailored to their needs.

In the project, we are considering what models communities design given a range of data and looking at the process of community engagement.

We are interested in links between community participation and health literacy. If we engage communities in thinking about their health, do we improve health literacy at both the individual and community level?

We have six PhD students attached to the project, including one who is looking at international exemplars of community participation in a number of countries.

The eight things we’ve learnt
Through all of the projects we have been engaged in, there are some simple things that we have learnt.

1.Engaging citizens in health decision-making is important but there must be different ways for people to engage and they must be supported with development opportunities.

2. You need to be clear what you are engaging about. You need to think about where you sit on the ladder of participation and the best way to achieve what it is that you want to achieve.

3. There must be clear and transparent processes around participation. It is important that people understand the purpose of their participation, how much power they have in decision making, whether decisions have already been made and whether their views will fundamentally change or influence decisions.

4. Power is a fundamental consideration. The tokenistic consumer on a program advisory group – the risk with these approaches is that a genuine intention to empower can serve to further marginalise and disempower. Engaging people on a committee or steering group can serve to neutralise criticism and can ensure that we can say that we have consulted, however, the benefits for those involved may be limited. One of the questions to ask is who decides what gets decided? How are the agenda and the process of participation decided? Have we confronted and discussed the power relationships that exist within the groups that we establish?

5. Personally, I don’t believe that all participation should aim at engaging all people. The risk is that it becomes managerialist participation, an exercise to simply tick boxes. One of the questions that we ask is who is included who is excluded and does it matter? What processes are used to engage people and are these the best processes for these groups?

6. Ensuring people have access to information is important to ensure that input and decisions can be based on evidence. This must include access to financial and cost data. When people are given costs, policies, and constraints and can include these in their deliberations, participation rises. True participation is not just about listening. The assumption that whatever a local community says is true must be true works directly against meaningful participation. Communities must be informed. Holding an open public meeting and asking people what they want without any parameters is a dangerous thing to do and serves to promote individual agendas and leave people feeling devalued and frustrated.

7. Higher levels of participation take time. There is an enormous amount of work in building trust, discussing power and developing meaningful conversations.

8. The word empowering is a really interesting and overused one. We often talk about giving people a voice but I believe that it is far more. There is enormous opportunity for communities to develop solutions, to come up with creative ways of addressing the issues that they encounter rather than waiting for solutions to be imposed from the top down. A really simple but great example of this was a presentation that I gave in a community about the health reform agenda. An older woman came up to me afterwards and said that her biggest fear was that she would die alone and would be in her house without being found.  A couple of young women standing there reassured her that they could help. By the end of the conversation they had set up a simple process where they would call her regularly.

Come back to the social determinants of health.

Designing participation processes cannot be just confined to the health sector. When we think about the social determinants of health, most of them are outside the direct control of the health sector.

Participation processes must be multi-sectoral and must be designed to open up meaningful discussion across a range of sectors.

Quoting from the WHO report on the social determinants of health: ‘In countries at all levels of income, health and illness follow a social gradient; the lower the socioeconomic position, the worse the health’.

Putting right inequities between and within countries is a matter of social justice, it is an ethical imperative but most importantly, it is all of our responsibility.

• Credit for the photograph to Damian Caniglia.

 

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Federal Budget 2019-20
Federal Budget 2020-21
Federal Budget 2021-22
Global health and climate change
2019-20 climate bushfire emergency
asylum seeker and refugee health
Climate emergency
disasters
Ebola
extreme weather events
flooding 2011
global health
NHS
NZ Election 2017
WHO
health
Healthcare and health reform
abortion
adverse events
aged care
allied health care
Australian Medical Association
cancer
cardiovascular disease
child health
Choosing Wisely
chronic diseases
co-payments
Cochrane Collaboration
complementary medicines
conflicts of interest
death and dying
diabetes
digital technology
disabilities
e-health
emergency departments and care
Equally Well
euthanasia
evidence-based issues
general practice
genetics
health & medical marketing
health and medical education
health and medical research
Health Care Homes
health ethics
health financing and costs
health reform
health regulation
health workforce
HIV/AIDS
hospitals
HRT
infectious diseases
influenza
international medical graduates
journal articles
LGBTIQ
medical marijuana
Medicare Locals
men's health
mental health
MyHospitals website
National Commission of Audit 2014
National Health Performance Authority
naturopathy
NDIS
NHMRC
non communicable diseases
nurses and nursing
oral health
organ transplants
out of pocket costs
pain
palliative care
paramedics
pathology
Pharmaceutical Benefits Scheme
pharmaceutical industry
pharmacy
Pregnancy and childbirth
primary health care
Primary Health Networks
private health insurance
quality and safety of health care
rural and remote health
screening
sexual health
social media and healthcare
suicide
surgery
swine flu
telehealth
tests
TGA
trauma
women's health
youth health
Indigenous health
#CTG10
#NTRC
Acknowledgement
cultural safety
Indigenous education
Lowitja Institute
NT Intervention
social and emotional wellbeing
Uluru Statement
WA community closures
News about Croakey
PIJ Commissions 2021
Public health and population health
#PreventiveHealthStrategy
#UnmetNeedsinPublicHealth
air pollution
alcohol
consumer health matters
COVIDwrap
environmental health
Fetal Alcohol Spectrum Disorders (FASD)
food and nutrition
gambling
Government 2.0
gun control
health communications
health impact assessment
Health in All Policies
health inequalities
health literacy
human rights
illicit drugs
injuries
legal issues
marriage equality
Media Doctor Australia
media-related issues
nanny state
National Preventive Health Agency
obesity
occupational health
physical activity
plain packaging
prevention
public health
public interest journalism
road safety
sport
sugar tax
tobacco control
transport
vaccination
violence
Web 2.0
weight loss products
Royal Commission
Social determinants of health
discrimination
education
justice
Justice Reinvestment
NBN
Newstart
poverty
racism
social policy
Summer reading 2020-2021
Tasmanian election 2021
Testing Croakey News category 1
The Croakey Archives
#cripcroakey
#HealthEquity16
#HealthMatters
#IHMayDay (all years)
#IHMayDay 2014
#IHMayDay15
#IHMayday16
#IHMayDay17
#IHMayDay18
#LoveRural 2014
Croakey Conference News Service 2013 – 2019
2013 conferences
Australian Centre for Health Services Innovation Forum 2013
Australian Health Promotion Association Conference 2013
Closing the Credibility Gap 2013
CRANAplus Conference 2013
FASD Conference 2013
Health Workforce Australia 2013
International Health Literacy Network Conference 2013
NACCHO Summit 2013
National Rural Health Conference 2013
Oceania EcoHealth Symposium 2013
PHAA conference 2013
2014 conferences
#IPCHIV14
AIDA Conference 2014
Congress Lowitja 2014
CRANAplus conference 2014
Cultural Solutions - Healing Foundation forum 2014
Lowitja Institute Continuous Quality Improvement conference 2014
National Suicide Prevention Conference 2014
Racism and children/youth health symposium 2014
Rural & Remote Health Scientific Symposium 2014
2015 conferences
#CPHCEforum
#CRANAplus15
#HSR15
#NRHC15
#OTCC15
Population Health Congress 2015
2016 conferences
#AHHAsim16
#AHMRC16
#ANROWS2016
#ATSISPEP
#AusCanIndigenousWellness
#cphce2016
#CPHCEforum16
#CRANAplus2016
#IAMRA2016
#LowitjaConf2016
#PreventObesity16
#TowardsRecovery
#VMIAC16
#WearablesCEH
#WICC2016
2017 conferences
#17APCC
#ACEM17
#AIDAconf2017
#BTH20
#CATSINaM17
#ClimateHealthStrategy
#IAHAConf17
#IDS17
#LBQWHC17
#LivingOurWay
#OKtoAskAu
#OTCC2017
#ResearchTranslation17
#TheMHS2017
#VMIACConf17
#WCPH2017