| Literature DB >> 27704684 |
Rae Thomas1, Rebecca Sims1, Chris Degeling2, Jackie M Street3, Stacy M Carter2, Lucie Rychetnik4,5, Jennifer A Whitty6, Andrew Wilson7, Paul Ward8, Paul Glasziou1.
Abstract
BACKGROUND: Opportunities for community members to actively participate in policy development are increasing. Community/citizen's juries (CJs) are a deliberative democratic process aimed to illicit informed community perspectives on difficult topics. But how comprehensive these processes are reported in peer-reviewed literature is unknown. Adequate reporting of methodology enables others to judge process quality, compare outcomes, facilitate critical reflection and potentially repeat a process. We aimed to identify important elements for reporting CJs, to develop an initial checklist and to review published health and health policy CJs to examine reporting standards.Entities:
Keywords: CJCheck; checklist; citizen jury; community jury; reporting standards
Mesh:
Year: 2016 PMID: 27704684 PMCID: PMC5513001 DOI: 10.1111/hex.12493
Source DB: PubMed Journal: Health Expect ISSN: 1369-6513 Impact factor: 3.377
Ranking outcomes of Delphi rounds 1 and 2
| Checklist items | Ranking of Delphi respondents | ||||||
|---|---|---|---|---|---|---|---|
| Important | Somewhat important | OK | Somewhat unimportant | Unimportant | Important, but not necessary to report | ||
| Round 1 (N=8) | |||||||
| Planning | Was the stakeholder/committee's role clearly described? | 4 | 2 | 1 | 1 | 0 | NA |
| Was the selection of experts (who was chosen and why) adequately described? | 4 | 3 | 1 | 0 | 0 | NA | |
| Were the experts roles clearly defined? | 5 | 3 | 0 | 0 | 0 | NA | |
| Was the Jury “charge” or instruction clearly described? | 6 | 2 | 0 | 0 | 0 | NA | |
| Jurors | Was the study recruitment strategy clearly described? | 6 | 2 | 0 | 0 | 0 | NA |
| Were inclusion/exclusion criteria reported? | 7 | 1 | 0 | 0 | 0 | NA | |
| Was the type of participant/juror described (unaffected public, affected public, advocate)? | 6 | 1 | 1 | 0 | 0 | NA | |
| Were the demographics of the jurors reported (age, gender, education, attainment)? | 3 | 4 | 1 | 0 | 0 | NA | |
| Procedure | Was the role and experience of the facilitator described (e.g. impartial, informed, member of research team, independent)? | 2 | 2 | 4 | 0 | 0 | NA |
| Were materials provided to the jurors adequately described and accessible? | 5 | 2 | 1 | 0 | 0 | NA | |
| Was the expert cross‐examination opportunities described? | 2 | 5 | 1 | 0 | 0 | NA | |
| Was the jury outcome reported? | 6 | 0 | 1 | 0 | 1 | NA | |
| Scheduling | Was the schedule (how often and interval) and length (days/hours) of juror meetings reported? | 6 | 2 | 0 | 0 | 0 | NA |
| Was the daily schedule of events described? | 1 | 4 | 3 | 0 | 0 | NA | |
| Was the number of presenters and their topics described? | 4 | 2 | 2 | 0 | 0 | NA | |
| Are the expert presentations available? | 2 | 3 | 3 | 0 | 0 | NA | |
| Were the lengths of the presentations reported? | 0 | 4 | 2 | 2 | 0 | NA | |
| New items suggested from Round 1 | Were the jurors paid? | – | – | – | – | – | NA |
| How many jurors were there? | – | – | – | – | – | NA | |
| What was the influence of the jury outcome on policy? | – | – | – | – | – | NA | |
| What was the framing/nature of jury deliberations? | – | – | – | – | – | NA | |
| What was the influence of the commissioning body on the jurors? | – | – | – | – | – | NA | |
| Round 2 (N=9) | |||||||
| Re‐ranked from Round 1 | Was the role and experience of the facilitator described (e.g. impartial, informed, member of research team, independent)? | 3 | 4 | 0 | 2 | 0 | 0 |
| Was the schedule (how often and interval) and length (days/hours) of juror meetings reported? | 4 | 4 | 1 | 0 | 0 | 0 | |
| Are the expert presentations available? | 3 | 4 | 1 | 0 | 0 | 1 | |
| Were the lengths of the presentations reported? | 2 | 1 | 5 | 0 | 0 | 1 | |
| New items suggested from Round 1: to rank | Were the jurors paid? | 2 | 1 | 3 | 3 | 0 | 0 |
| How many jurors were there? | 6 | 2 | 1 | 0 | 0 | 0 | |
| What was the influence of the jury outcome on policy? | 1 | 3 | 1 | 2 | 1 | 1 | |
| What was the framing/nature of jury deliberations? | 5 | 1 | 2 | 0 | 0 | 0 | |
| What was the influence of the commissioning body on the jurors? | 2 | 3 | 0 | 2 | 1 | 1 | |
Figure 1PRISMA flow chart
Studies included in data extraction
| Article information | Health topic | Charge |
|---|---|---|
| Bennett et al., 2007, | Genetic Test Results and Life Insurance | Consider three policy options that might follow the expiry of the moratorium on the use of genetic tests by insurers. |
| Bombard et al., 2011, | Health technologies | What are the core values that should guide MASOHTAC evaluations of health technologies, when and by whom should this be done? |
| Bombard et al., 2013, | Health technologies assessment | What questions do you have about the value of GEP that you would like to see AHTAC include in its review?What questions do you have about the area of personalized medicine, in general, that OHTAC could consider in its review of these new technologies? Which ethical and social questions from Hofmann's list need to be applied to (i) GEP and (ii) personalized medicine in general? |
| Braunack‐Mayer et al., 2010, | Pandemic planning | Who should be given the scarce antiviral drugs and vaccine in an influenza pandemic? Under what circumstances would quarantine and social distancing measures be acceptable in an influenza pandemic? |
| Burgess et al., 2008, | Biobanking | Main goals of each day were to share knowledge, identify values and design a biobank |
| Carman et al., 2015, | Medical evidence determining healthcare choices | Should individual patients and/or their doctors be able to make any health decisions no matter what the evidence of medical effectiveness shows, or should society ever specify some boundaries for these decisions? |
| Chafe et al., 2010, | Health technologies | In your opinion, is the Ontario Ministry of Health and Long‐Term Care's (MOHLTC) approach to funding PET scanning a reasonable one and in the nest interests of the citizens of Ontario? What suggestions for modifications do you have, and why? |
| Chafe et al., 2011, | Accepting new patients | Do you think that the CPSO policy “Accepting New Patients” is reasonable? If yes, how would you make it better? If not, what fundamental changes should be made? |
| Dunkerley et al., 1998, | Introduction of new genetic technologies into health care | What conditions should be fulfilled before genetic testing for people susceptible to common diseases becomes available on the NHS? |
| Einsiedel & Ross, 2002, | Xenotransplantation | The safety, efficacy, ethical and regulatory issues surrounding the potential use of xenografts |
| Einsiedel, 2002, | Xenotransplantation | Should Canada proceed with xenotransplantation and if so, under what conditions? |
| Elwood & Longley, 2010, | Where does the responsibility for maintaining a person's health lie | What is “illness” and what is “health” and what is the overlap between these? What are my responsibilities, and those of others, in maintaining my health? What help should I expect when making decisions about my health? Who knows best – the public, general practitioners or hospital specialists, and to what extent, and in what manner, should I, as a member of the general public, be informed? How should the risks and benefits of medicines be balanced in relation to the prevention of disease and the maintenance of health? Who should evaluate this balance and who should take the decisions about medicines and behaviours which will help maintain my health? What is the role of the regulatory authorities? |
| Finney, 2000, | Management of back pain | Should Buckinghamshire Health Authority fund treatment from osteopaths and chiropractors for people with back pain? |
| Fish et al., 2014, | Microbial water pollution | What risks arise from the microbial pollution of water courses and how significant are they? What are the origins of these microbial risks and how culpable are livestock farming practices within them? What more could reasonable be done to mitigate the impact of livestock farming practices on water quality? Where do responsibilities begin and end when controlling these microbial risks arising from livestock farming? |
| Gooberman‐Hill et al., 2008, | Local priorities for health and social care research | What are the priorities of the citizens of Bristol for research into the provision of primary health and social care? |
| Herbison et al., 2009, | Urinary incontinence | What can researchers study to make your life better? |
| Hodgetts et al., 2014, | Assisted reproductive technologies | Should the criteria for public funding of ART be changed? If yes, why? If no, why not? |
| Iredale et al., 1999, | Genetic Testing | What conditions should be fulfilled before genetic testing for susceptibility to common disorders becomes widely available on the NHS? |
| Iredale et al., 2006, | Technology for reproducing decision making | Designer babies: What choices should we be able to make? |
| Kashefi et al., 2004, | Improvement of health and well‐being | What would improve the health and well‐being of residents of SWB? |
| Lee et al., 2014, | Pandemic Response | What is the likelihood of a national pandemic occurring in Korea due to the avian influenza? How would you rate Korea's response system against a possible outbreak of a national pandemic? What are the areas of improvement necessary to ensure effective readiness and response against a national pandemic? What are the ways of enhancing citizens’ understanding and confidence in the National Response System? |
| Lenaghan et al., 1996, | Priority setting | How priorities for purchasing health care should be set, according to what criteria, and what role, if and, the public should have in these decision |
| Longstaff & Burgess, 2010, | Biobanking | – |
| McWhirter et al., 2014, | Biobanking | – |
| Menon et al., 2008, | Setting priorities for health technology assessment | Developing a set of criteria to guide priority setting of HTA |
| Molster et al., 2013, | Biobanking | Develop recommendations on how biobanking should be set up and operate in Western Australia |
| Moretto et al., 2014, | Taxation of junk food | Is taxation on food and drinks an acceptable strategy to the public in order to reduce rates of childhood obesity? |
| Nep et al., 2013, | Genetically modified foods | Should the salmon genome be sequenced? Why or why not? |
| O'Doherty & Burgess, 2009, | Biobanking | Design specifications for biobanking in British Columbia |
| Parkin & Paul, 2009, | Use of medical information | Should researchers contracted by a public body be permitted to use medical information about identifiable people, without their consent, for the following purposes: routine analysis to identify the potential adverse effects of medicines that are newly introduced into New Zealand; investigation of emerging concerns about the adverse effects of medicines currently being used by New Zealanders? If so, under what circumstances and with what safeguards, if any? If not, why? |
| Paul et al., 2008, | Breast Cancer Screening | Should the New Zealand government offer free screening mammograms to all women aged 40–49 years? |
| Rogers et al., 2009, | Pandemic Influenza Planning | What is an acceptable framework for communication in an influenza pandemic? |
| Rychetnik et al., 2014, | PSA screening | Deliberate evidence presented by experts on PSA screening and formulate recommendations on potential government actions |
| Secko et al., 2009, | Biobanking | – |
| Stafinski et al., 2014, | Health technologies | – |
| Thomas et al., 2014, | PSA screening | What do you, as a group of men, think about a government organized invitation programme for testing for prostate cancer? |
| Timotijevic et al., 2007, | Food Policy | Does food retailing need to change in order to achieve optimal health and diet? |
| Toni et al., 2001, | Genetically modified organisms | Can GMOs contribute to solving hunger in Brazil and the world? Can GMOs facilitate access to food and food security and serve the interests of small‐scale farmers and the poor? Does enough scientific evidence exist about the consequences of GMOs for the environment to justify their release? Has the analysis, monitoring, reporting and decision making on field trials and commercial liberalization been done with sufficient caution, transparency and participation of civil society? Is there sufficient information on GMOs and is it accessible? Can consumers and farmers exercise a right to choose? |
Figure 2The number of included studies with rating descriptions of checklist items. *Indicates items identified by Delphi respondents as important