Tag: informed consent

Consumer/Lived Experience Conference report – International Congress on Obesity 2022

Posted on October 25, 2022

Report by Clare Mullen, Health Consumers’ Council WA

In October 2022, over 1,000 people were in Melbourne to participate in the International Congress on Obesity.

I had the opportunity to attend as a member of the Weight Issues Network (WIN) as a Lived Experience speaker, as well as through my roles with Health Consumers’ Council WA, The WELL Collaborative and the Obesity Collective. My attendance was part funded by WIN (thanks to support from the ICO organisers) and part by HCC, through my work on the WELL Collaborative, that’s funded by WAPHA and the Department of Health.

There were three other people from WIN who attended as Lived Experience speakers. Dr Nic Kormas, also on the WIN Board as a clinician, was attending too.

There were three main streams of content:

  • Basic research[1]
  • Clinical – looking at treatment and care
  • Public health – looking primarily at prevention options

There were also a number of cross-cutting sessions – where people with perspectives from each of these streams all presented together. Apparently this is not very common – which I found surprising.

 

Lived Experience/consumer speakers were involved in five of the sessions, and we also ran a workshop on “So you want to engage people with lived experience of obesity?” which was attended by about 50 people. We all received positive feedback about our contributions to the discussions, and I hope we’ve paved the way for Lived Experience speakers to be involved in more of the sessions in future.

We also had a table in the exhibition hall and had people signing up to the WIN mailing list, as well as taking away a practical guide to creating weight inclusive spaces in clinical settings. (I have some of these in hard copy, so let me know if you’d like one to take along to any healthcare setting you attend regularly!)

Takeaways and personal reflections

  • If carrying extra weight is either causing you health concerns, or you’re concerned about your increased risk of future health concerns, treatments are available. These include a few different types of medications as well as surgery – and options are increasing. These clinical interventions may complement individual behaviour which could include changes to nutrition, physical activity, sleep, stress and social connections.
  • Extra weight can be a risk factor for some people for some health issues. To work out if carrying extra weight has health implications for you it’s important to speak with an informed health professional who has contemporary and detailed knowledge on obesity, overweight and health – and can help you assess your personal risk, in the context of your life, so you can work out the best treatment and care options together.
  • Currently, it’s really hard to find informed health professionals who have contemporary and detailed knowledge on obesity, overweight and health. Health Consumers’ Council is working with the WA Primary Health Alliance and the WA Department of Health to provide consumers with access to a list of health professionals who have undergone additional training on this topic as a starting point – watch this space!
  • Adolescence may be a critical time to offer person- and family-centred interventions – changes made at this point can be life-changing and long-lasting.
  • There is a critical shortage of treatment services for obesity – particularly for adolescents. (I personally find this borderline unethical.)
  • I think there needs to be a lot more discussion and review about bariatric surgery. I learned that currently, it’s believed to be difficult to work out which patients will get positive outcomes from the treatment – with outcomes varying significantly. I was also reminded that one of the possible benefits of this surgery is extended life expectancy – and that this effect may still be likely, even if someone regains weight after the surgery. (Overall, I think we need to upskill a few more consumers to learn about the technical details of this treatment and cast an informed consumer lens over the evidence and be part of the debate. I certainly don’t feel informed enough to go up against clinical experts on this subject.)
  • From a value-based healthcare point of view, I believe there could be some consideration given to funding models for bariatric surgery – for example, I wonder whether surgeons would be more invested in helping people to work out if surgery was going to be right for them, if the surgeon’s payment was impacted by the outcomes of the surgery (as assessed against patient-reported outcome measures agreed upfront). In fact, this could be applied to lots of types of treatment…
  • Weight stigma has a huge role to play in muddying the waters on healthcare in this area. I’m left wondering, how can we get to a place where everyone can distinguish between decisions we’re making based on desires we might have to look a certain way (influenced by societal pressures) versus decisions we’re making that could improve our health – and so make a really informed decision about what actions to take?
  • I think we also need more deliberative discussions as a community about how we navigate the various aims of a) dismantling the obesogenic environment[2] we live in, b) creating the conditions where people are able to more easily do things that have a positive impact on health (and broaden this beyond nutrition and physical activity), and c) ensuring personalised care and treatment is available to people whose health is impacted by carrying extra weight. Unfortunately, the public health narrative still too often contributes to weight stigma.

Clare Mullen, October 2022

p.s. as well as the serious work, it was great to meet and connect in person with the people involved in this work that I’ve been meeting online for the last couple of years.

[1] Basic research, also called pure research or fundamental research, is a type of scientific research with the aim of improving scientific theories for better understanding and prediction of natural or other phenomena, https://en.wikipedia.org/wiki/Basic_research#cite_ref-Research2014avg_1-0

[2] “The term ‘obesogenic environment’ is used to describe an environment that promotes obesity”, https://www.aihw.gov.au/reports/overweight-obesity/overweight-and-obesity/contents/causes-of-overweight-and-obesity

Why am I here? Because Informed consent…

Posted on July 14, 2019

By Pip Brennan, Health Consumers’ Council Executive Director

This week, the I have the honour as the Health Consumers’ Council Executive Director to be guest tweeter on the Croakey @WePublicHealth page for the week of 15th July 2019.

For the first tweet I thought it only polite to introduce myself, and it got me to thinking again – why am I here? Why am I in this role? Why did I choose the topic of Informed Consent this week? In many ways informed consent is at the heart of most health complaints, and is a core part of why I believe in the importance of the work of the Health Consumers Council.

My passion for informed consent started from this GP conversation that happened to me and I would suspect pretty much every pregnant women in Australia:

GP: Congratulations, you’re pregnant! Do you have private health insurance?

Woman: Yes

GP: Which obstetrician would you like?

This is not an informed consent conversation. Why not? Because there is no mention of midwifery-led services here. There is no nuanced conversation about the evidence-based models of care that note that if you are low risk, you don’t actually need an obstetrician.

Like many people, my first real adult interaction with the health system was when I was pregnant. It really got me thinking, why is it so hard to access evidence-based models of care because they happen to be midwifery led? In my nearly twenty years as a consumer representative, I don’t believe this initial GP conversation has shifted in the way I hope it will in time.

I also think this type of conversation is by no means unique to maternity care, and that the path from the GP to a surgical specialist is short, with not enough detours past midwifery, nursing and allied health professionals. Not so long ago, my partner came off his bike and attended a GP. The advice was that it possibly was a full thickness rotator cuff tear in his shoulder, and surgery was required. However, the physiotherapist he went to noted it was a partial tear and gave him exercises. It healed beautifully over the next six to eight weeks without any need to trouble the surgeon.

Don’t get me wrong, I am very committed to the importance of having a really good GP that knows you over the course of your life, and here at the Health Consumers Council we regularly advise consumers to invest time in finding the right GP. I am very attached to my GP and she is a really key part of my wellness plan. But GPs are usually the gateway to the path of care we can travel, and it’s important that we choose the right care for our circumstances. The consumer always pays the ultimate price for their own health care choices.

Twenty years ago, after much research and some very good luck at stumbling across a birthing centre in a local hospital, plus the grace of everything going well on the day, I was able to have the drug free delivery I was hoping for. I have never forgotten the day my daughter was born. The medical and midwifery staff would have gone home at the end of the shift and likely not given it another thought.

In short, informed consent is a fundamental consumer right. And to exercise that right, we need to know that a) it’s OK to ask questions, and b) it’s also OK to say “can I think about this” or even “no” to suggested treatments.

Pip Brennan is Executive Director of the Health Consumers Council in WA, and independent, not for profit organisation dedicated to ensuring the consumer voice is at the heart of health policy, service planning and review. Pip has worked in the community sector for the last 18 years. Inspired by her own experiences of the confusing maternity care system, Pip initially volunteered as a maternity consumer representative in a range of roles. She began her paid health career as an Advocate working at the Health Consumers’ Council (HCC) from 2006. She has been a conciliator of health complaints, a health NGO professional and always a firm believer in the value of consumers being at the table. She took on the role of Executive Director of the Health Consumers Council in WA from 2015 and was a panel member on the state’s recent Sustainable Health Review.

Wasted – did you watch this?

Posted on September 29, 2015

Wasted

Did you watch the Four Corners episode Wasted on waste in health care last night? It is highly recommended viewing and made a number of interesting points:

  1. That our Medicare Benefits Schedule (MBS) pays an amount to a health care provider every time they provide a test or treatment. This provides a perverse incentive for medical practitioners to offer more tests and treatments. And more does not always equal better.
  2. That up until the last five years, procedures were not subjected to an evidence base test before being added to the MBS. Which means there are several decades worth of procedures on the MBS that do not pass the evidence base test.
  3. That there is no connection easily made between the number of treatments done and the health outcomes they are achieving for us. So while data is collected from MBS, from our hospitals and health services, from our diagnostic services, this data is collected in silos and cannot easily be translated into a coherent picture of what works, and what doesn’t
  4. That health consumers are sometimes asking for diagnostic procedures and treatments on the understanding that this will ensure they a) reduce their worries and concerns and b) they will get better.
  5. That it takes time in a clinical consultation to explain why tests and treatments may not actually achieve the outcome the consumer is seeking, and spending more time discussing and explaining treatments and options with consumers is not financially rewarded.

At one point consumers are encouraged to ask questions in order to feel sure that the treatment they are having will a) be useful and b) won’t potentially harm them and c) won’t waste our precious resources. A key question is “what’s the evidence for that?”

The imagery throughout the episode of the journey we all face through the different systems once a test is ordered highlights how important it is for us to get on the train knowing exactly where we may end up.

If you have a body and have ever been to a GP, then this story affects you, and you can be part of the change. The current MBS reform has a consumer survey open until 9th November 2015 which aims to help update the MBS to reduce waste and unnecessary treatments. Jump on board now to have your say – you have until 9th November 2015.

This blog was written by Pip Brennan, Executive Director of the Health Consumers’ Council.