We hate data and dialogue?

shutterstock_52134823Activating the public’s voice in healthcare priority setting intuitively makes sense but can be laden with challenges and risks marginalising those voices that most need to be heard. Surely these aren’t reasons for not trying?

Theorists see a number of benefits in involving the public in healthcare priority setting and perhaps the one that resonates the most with me  is instrumental benefit – engaging the public can help identify key social value considerations that should shape policy. After all, a policy should complement the opinions of the public it serves.

Will the public engage when we ask them questions like, “what principles should your health provider work to when serving your community?” and “what outcomes do you expect from your health service and deem most important?” Will they even know how to respond? Will the responses be robust, reliable, valid, generalisable or any other measure we care to apply to conclude whether the data set presents value to decision making or not? And if we can’t agree an answer to these questions at the outset, why should we even start?

Hierarchies of data and levels of analysis have featured in human endeavours since the beginning – the warning cry of an alpha-male caused more commotion among apes than the alerts of a junior, a multi-centre study with replicable results presents a more attractive offering than a qualitative interview for many researchers. Yet should the junior monkey be ignored or the insights from the interview be considered any less pertinent? As the socialisation of media continues unabated and society starts to explore the notion of the quantified self and big data, will our hierarchies of information change?

Pondering these questions, America Speaks provides a 19 year long case study of how technology and a bit of “out of the box” thinking can be used to get the public to air their views and generate engagement with “big debates”. Using technology to facilitate “uber town hall meetings” across the US, the programme has harnessed the public’s voices to assist policy decision-making. Imagine what could be possible as we go into the era of 4G, the normalisation of silver surfers, the maturation of Generation Y and the coming-of-age of Generation Wifi – the willingness and ability of the public to share its opinions could be limitless!

As for hierarchies of data, the world of clinical trials is seeing a move towards real world data, highlighting a change in classical notions of data value. Social-research methodologies such as the citizen jury exist that can be used to guide the process of insight collection and deliberation on complex topics. I for one can imagine using the citizen jury format to facilitate a set of tweet-ups on a pertinent topic such as the impending obesity time bomb or the continuation of full health services for smokers.

The potential for the public to add value to the process of healthcare priority setting was highlighted by Litva et al. in 2002 and the world has changed significantly since then – more things are possible than ever before. Back in 2010, we launched our We Hate Social Media campaign to challenge misconceptions in the health industry about the role of social media in communications. Now at the start of a new year, I wonder if “we hate data and dialogue” and I truly hope this is not the case.


| Dr Simon Moore

I think you allude to critical point about data capture – its only as good as you are at a) asking the right questions, b) in what format and c) allowing respondents to tell their own story (free from cognitive anchoring or framing). So for example if you ask patients ‘Are you experiencing pain with your present condition? Yes or No’ it has been shown that around 83% say yes. If you add a middle ground response of ‘maybe’ the yes to pain response drops to 40-50%. If you ask the question in another way ‘In terms of your present condition do you experience any: Anxiety, Discomfort,or Pain – the pain selection drops to around 20%. If you simply ask people to ‘tell me about your experience with your present condition’ – pain indication might then drop further to below 20%. So my point is data and dialogue are vital insights – but the way agencies are currently undertaking methods to uncover those insights is shocking!

| NW1er

Hi Simon, thanks for your comment. I hope all has been well since we last saw you – we should catch up to discuss “what’s cooking”.

I agree regarding the absolute importance of a clear methodology and rigour in all aspects of this, including question development. This is especially pertinent if our aim is to develop data/insights that challenge the traditional hierarchy and can be considered with credibility.

All too often agencies can inherit surveys that could have been otherwise constructed and I fear insufficient consideration is given to the objectives of the research when it is initiated. Given the costs of large scale quantitative surveys, it’s such a shame when they aren’t designed to serve a “higher purpose” and the leading driver is the development of “top stats” and “guess what?” figures. The challenge can be compounded when the research is commissioned at a global level, and the insights and methodology requirements may vary from market to market.

A research approach should be co-created with the audiences and stakeholders that the outcomes aim to inform, and a discovery phase should be incorporated into research planning. This could even be done via some of the novel approaches the post alludes to, and the act of engagement and participation in itself will create traction around the issue.

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