Citizens’ juries can bring public voices on overdiagnosis into policy making
BMJ 2019; 364 doi: https://doi.org/10.1136/bmj.l351 (Published 30 January 2019) Cite this as: BMJ 2019;364:l351Opinion
Using citizen science to boost healthcare improvement research
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Greater social and political engagement of citizens in the complex policy areas of overdiagnosis is both needed and desirable. Well informed public engagement by means of Citizen Juries (Deliberations), if well and properly run, are to be recommended, as exampled by Degeling and colleagues. [1] The process of conducting Citizen Juries (Box 1.) provides for all participants to be well informed of the issues in an unbiased manner and facilitated to debate them together with a range of experts with varying views and opinions. By this means they are led to appreciate the uncertainties and realities of policy making in healthcare for difficult, complex issues such as overdiagnosis in population screening, for example.
Service-users can identify broader considerations which might otherwise be overlooked by `experts`: selection of suitable witnesses by an independent moderator from a random cross section of the public is thus important so that it brings a diversity of ideas. Issues such as resource allocation will be considered: an aspect that an under-informed general public is less likely to consider, as can also regrettably be the case in single-issue patient groups.
Overdiagnosis is now a recognised serious problem that afflicts delivery of healthcare in many areas of the world. Resources in all countries are finite: they should not be wasted on any interventions that cause overdiagnosis. All citizens should recognise their responsibility to avoid this wastefulness: citizens juries are an excellent method for enabling this.
[To the authors: 1st paragraph beneath box, last sentence: `citizens/patients` please, NOT just `patients`. Please don`t turn citizens into patients unnecessarily!]
Hazel Thornton
Independent Citizen Advocate for Quality in Research and Healthcare
[1] Degeling C, Thomas R, Rychetnik, L. Citizens’ juries can bring public voices on overdiagnosis into policy making. https://doi.org/10.1136/bmj.l351 BMJ 2019;364:l351
Competing interests: No competing interests
Citizens’ juries are unnecessary. The only voices that should matter are the clinician’s and the patient’s.
“Overdiagnosis” is at best a vague term and at worst, an incorrect term. This journal is among several which have published articles on the problematic nature of “overdiagnosis”.1,2 However, more problematic than how it’s defined is how it plays out clinically in the relationship between clinician and patient.
Overdiagnosis typically arises as a consequence of screening for early or asymptomatic indications of disease; e.g. breast cancer. A chronological feature is inherent in screening: The clinician peers into the patient’s future and into his own and wonders, Should I intervene, treat this patient for a condition that’s asymptomatic, and which may never become symptomatic in the future? Would I be acting irresponsibly, retrospectively, if I fail to intervene? Or should I play it safe and intervene? In the ancient world, a powerful authority who faced a comparable difficulty consulted an oracle—or even several oracles, if the problem was grave. The question the oracles were supposed to answer was, “What does the future hold?” The seeker wanted certainty regarding an outcome.
Modern clinicians shouldn’t secretly pursue certainty, because it’s elusive. Overdiagnosis, especially through screening, is a subtle attempt to achieve certainty by preempting a disease, to ensure that it doesn’t arise, or at least to reduce the probability that it will. Screening and diagnosis are concerns best handled by the clinician. Their responsibility is twofold: (1) to present their viewpoint; i.e. to explain to the patient, based on evidence, the purpose and risks of screening (given the patient’s demographics and medical history), and the purpose and risks of intervening (given the patient’s demographics and medical history); and (2) to ask the patient, “What do you believe should be done?” In answering this question, the patient will definitely express his personal values, some or all of which might conflict with “public” values. The clinician and patient educate each other, learn from each other, and jointly decide on a course of action.
The introduction of citizens’ juries will complicate a process that’s already fraught with complications.
1. Carter SM, Rogers W, Heath I, et al. The challenge of overdiagnosis begins with its definition. BMJ 2015;350:h869.
2. Brodersen J, Schwartz LM, Heneghan C, et al. Overdiagnosis: what it is and what it isn’t. BMJ Evidence-based Medicine 2018;23:1-3.
Competing interests: No competing interests
Re: Citizens’ juries can bring public voices on overdiagnosis into policy making
Your recent review article on Citizens’ Juries was timely, reported in the same week as the publication of the recommendations from the “Our Voice” Citizens’ Jury on Shared Decision Making. This was the first Citizens’ Jury to be held in Scotland to consider a healthcare topic. It was commissioned by the Chief Medical Officer for Scotland, Dr Catherine Calderwood, as part of the Realistic Medicine programme.
The process was conducted by the Scottish Health Council (SHC) and was similar to that described in your paper. Preparatory tasks included an implementation group, public consultation to define the question, appointment of an oversight panel and procurement of a provider.
The role of the oversight panel was to refine the question, agree the selection criteria and methodology and generally oversee running of the process. The oversight panel was made up from a multiagency group of stakeholders, from government, medical, nursing, social care, academia, SHC and lay representation. This group met several times before and during the process, with a final meeting planned in June to conclude the evaluation.
We selected participants from a defined geographical area, within 45 minutes travel on public transport. The sample was random but stratified to ensure representation of the wider Scottish population and was matched by age, gender and indicators of social deprivation. Full details of our methodology and reasoning can be found in the report http://scottishhealthcouncil.org/our_voice/citizens_jury.aspx#.XG2Eorp2uUk
We were overwhelmed by the response and commitment of participants. 250 people responded to an invitation to take part (a remarkable 10% response rate) and of the 25 selected, 24 people attended all 3 deliberations. 15 members of the jury also attended and presented at a 4th “report out” event where the full report and recommendations were given to the Chief Medical Officer for Scotland. The Scottish Government has given a firm commitment to respond to each recommendation with either a description of actions or reason why that recommendation cannot be taken forward.
The Jury made 13 recommendations to the question “ What should shared decision making look like and what needs to be done for this to happen”. The recommendations were themed around training for staff, public empowerment, access to information, advocacy and organisation of services. The recommendations are both insightful and reasonable and will be used to inform public policy and future development of services in health and social care. All members of the jury said how much they had enjoyed being part of the process.
The next steps are to respond to these recommendations, which we will do within 3 months. Throughout the process SHC has been conducting an evaluation. It is important to consolidate the learning from an organisational perspective to enable future Citizens’ Juries to be undertaken and to demonstrate the impact that they can have.
We would like to thank again the citizens who gave their commitment and enthusiasm to the process and to all those who contribute to the planning and delivery of the Jury. With specific thanks to Jez and Pete from Shared Future for their expert facilitation and advice.
Competing interests: No competing interests