Activating 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 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. However, when considering this at a global level, we really need to take into account cultural differences and how the general public in different countries voice their views. What are the challenges faced by your country? How can we address these in attempting to stimulate debate and gathering data about healthcare needs across the globe?