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Busting some myths about consumer and community engagement in health decision-making

Health professionals are often resistant to the notions of consumer and community engagement and shared-decision making, according to collaborative decision-making specialist Max Hardy.

Hardy, a director of the consultancy group Twyfords, responds below to some of the common objections to such concepts.

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The missing ingredient in our health system

Max Hardy writes:

So what is all this fuss about consumer engagement; patient partnering; shared decision-making, patient-centred care and even more obscure perhaps, community engagement? Our health standards demand that we attend to such notions.

But the reaction of health professionals and especially clinicians tends to be either:

1. Where is the evidence that this makes any difference to health outcomes?

2. But we’ve been doing this our whole professional lives!

3. What is it meant to do or achieve?

4. I’m not really sure what it all means.

Let’s have a go at responding to each of these reactions.

1. Where is the evidence that this makes any difference to health outcomes?

There is oodles. How is this for starters?

  • decreased mortality (Meterko M, Wright S, Lin H, Lowy E, Cleary PD, – Health Services Research 2010)
  • decreased readmission rates (Boulding W, et al. The American Journal of Managed Care 2011)
  • decreased rates of healthcare-acquired infections in hospital (Edgcumbe D. Journal of Hospital Infection 2009:99-101).
  • reduced length of stay in hospital/improved functional status (DiGioia A, et al; Orthopaedics and Related Research 2007;463).
  • improved adherence to treatment regimens (Arbuthnott A, Sharpe D. Patient Education and Counselling 2009;77:60-67).
  • operational benefits including lower costs per case, improved liability claims experiences, and increased workforce satisfaction and retention rates. (Charmel P, Frampton S. Healthcare Financial Management 2008;March 62 (3):80-85)

The irony, I have found, is that there often is not a genuine curiosity to find the evidence.

It is more of an accusation that evidence does not exist, or not in the form that is likely to satisfy. (All sorts of reasons for this apparent lack of genuine curiosity – a matter worthy of another article I believe).

2. But we’ve been doing this our whole professional lives!

There is evidence of good practice in Australia, and some innovation.

But I’ve talked to enough of the right people to know that we are a long, long way behind the UK and North America.

In fact, the strategy of one of CEO of a major metropolitan hospital is to throw open senior positions and to recruit from the UK. Why? Because they are about 10 years ahead, they understand the benefits, and it is part of how they think.

Sadly, it is hard work for progressive leaders of health organisations to persuade others of the benefits.

3. What is it meant to do or achieve?

Think of any challenge in our health system.  Including consumers in a meaningful way is all about addressing those challenges more effectively.  It is not about doing it just for compliance purposes. There is too much at stake.

Health consumers are a seriously underutilised resource. Consumer and community engagement is seen as a chore, rather than an opportunity.

For consumers the experience too often is one of fighting to be heard, and then feeling marginalised. Despite the rhetoric around this being central to health reform, the discourse is one that focuses on dissatisfaction with past experiences.

Roz Diane Lasker MD puts a compelling case forward by referring to the ‘expert blind spot’. (Lasker RD and Guidry JA. Engaging the Community in Decision Making: Case Studies Tracking Participation, Voice and Influence. McFarland & Company, 2009.

Experts and organisations cannot see everything and know everything.

The blind spot represents what decision-makers and experts cannot know, (and what they don’t even know that they don’t know).

Engaging those voices directly affected and those voices that are often not heard, or who are invariably dismissed, provides the opportunity for breakthrough learning, more effective responses to crises and solutions to seemingly intractable problems to emerge.

Lasker asserts that citizen engagement, or participation, is required to draw on diverse collective wisdom. Expert driven processes invariably consider issues from a particular vantage point.

Sadly, when it comes to complex health issues consumer and citizen, or community, engagement fails the conditions required to inform wise decision-making.

Community and consumer engagement tends to be undertaken in a very limited fashion when it comes to planning for public health and viable health systems.

This is largely due to a commonly held view that the public can’t get their heads around complex issues and only have narrow interests or concerns as well as to negative experiences of health planners and executives with anything resembling “engagement” with health consumers or the “general public”.

4. I’m not really sure what it all means.

It’s time to find out. So much great work being done abroad, and to some extent in Australia.

Let’s take a fresh look and adopt a new mindset. It’s time that health organisations/ authorities/departments/agencies became committed, really committed to viewing health consumers as a vital asset, and not a problem to be solved, or a box to tick.

So is consumer and community engagement the missing ingredient to respond to complex health issues, or just more stuff to do?

Well, it depends. There is no doubt that it is just ‘stuff’ if there is little commitment to it, or belief in its efficacy.

On the other hand, there are numerous stories of where it has made a significant difference, and has proven to be the key element for improved health outcomes.

Some final thoughts:

  • Conventional approaches to engaging consumers or the public are unlikely to help us to meet the health challenges we face;
  • The mindset is all important – unless organisations recognise their blind spot, they will fail to see consumers and citizens as an asset, providing a type of expertise that is not available within providers;
  • Building capacity to collaborate well should become a priority for the health sector; and finally
  • The health challenges we are facing require collaborative leadership, creativity, and new ways of determining for our shared future – there is really no other way because we all need to be part of the solution.

 • A longer version of this article can be found here.

 • Max Hardy is Director, Twyfords and Co-author, “The Power of ‘Co’: The Smart Leaders’ Guide to Collaborative Governance.”

 

 

 

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  • 1
    Max Hardy
    Posted November 19, 2012 at 4:48 pm | Permalink

    I just wanted to add that the references to evidence were thanks to some terrific research undertaken by Dr Karen Luxford and her team documented in ‘Patient Centred Care Discussion Paper’ (Australian Commission on Safety and Quality in Health Care). You can acces this paper through this link http://intqhc.oxfordjournals.org/content/23/5/510.short

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