Costs and methodology of the Assisted Dying Jury (FOI)

Request

I would like information about the Assisted Dying Jury - Costs, elements of Methodology and Selection system, please.

A

Costs

a. what was the budgeted total additional cost of this whole activity in the business case (this should not include civil service salaries, usage of existing government property or IT)

b. what is the current projection for these total additional costs

c. how many civil service (or existing government contractor) man-days, not included in costs above, are projected to have been consumed by this activity (to include all planning activities, agendas, writing of minutes, engaging with academics and experts, contractual matters and attendance at events and so on

d. within the total costs, what is the budgeted or contracted subtotal cost of the academics providing support: the three ‘independent subject matter experts providing content oversight’ and the two ‘expert advisors’

e. within the total costs, what is the budgeted or contracted subtotal cost of other academic or expert briefings supplied to the jury

f. within the total additional costs, what is the budgeted or contracted subtotal cost of the ‘independent advisory panel’? Were they paid

g. what further costs were incurred to pay for (i) jury member selection and (ii) all other additional costs and, if so, to whom and for what

h. if there are any outturns or projected outturns that are materially different from the budgeted costs, please identify these and explain

B

Methodology and Selection processes

There is a lot more to the methodology of this complex exercise, but I have tried to limit this to key issues. The statements on webpage Citizens' Jury on assisted dying in Jersey (Gov.je) and the minutes are fairly imprecise about the various selection processes.

a. who, or what body, selected ‘Involve’ and ‘Sortition’ and on what basis? Please supply relevant documents 

b. who, or what body, selected the three ‘content oversight’ academics (Profs Huxtable, Jackson and Jones), and using what criteria, and by what selection process? Please supply relevant selection decision documents 

c. who, or what body, selected the two academic ‘expert advisers’ (Dr Mullock and Prof Ost)? What criteria were used and what was the selection process? For example, was one known to be, or from publications seen as, ‘pro assisted dying’ and the other ‘against’. Please supply relevant selection decision documents

d. in particular, what consideration was given in the decision that Dr Mullock and Prof Ost should act together as the ‘expert advisers’, when Prof Ost had supervised Dr Mullock’s PhD thesis Suzanne Ost | Lancaster University, which creates at least a perception of a lack of independence and possibly a lack of balance

e. who, or what body, selected those other people, academics, doctors and so on, to give briefings, using what methodology and against what criteria? Please supply relevant decision documents

f. was the ‘independent advisory panel’ selected through open competition via an appointment process? If so, who oversaw it? If not, who selected this panel and on what criteria? Were they required to declare interests and / or pre-conceived views on the subject, and whether they had signed the 2018 petition

g. what is the evidence that the ‘End of Life Choices Jersey’ 2019 survey run by 4insight with 1420 responses was representative of the views of the Jersey population? And was this any part of the basis for the attitudes input (along with the UK 2017 BSAS) into the jury selection process in para h(iii) below

h. the link above states: “The Jury was selected at random and demographically represents the Island's population.” The website states in various places that invitations were sent to 4600 addresses, of which 477 responded to register an interest and 23 participated in the jury. The first step is a broadly random process (I assume that the Chief Statistician generated 4600 addresses); the second in certainly not random, and nor is the third step:

i. please justify the statement above that ‘Jury was selected at random…'

ii. what is the evidence that the jury bears any resemblance to being representative of the population

iii. in the third non-random stage, given that the final selection was 23 out of 477 against the six criteria (age, gender, location, socio-economic status, place of birth and attitude), what methodology was used to select against the listed criteria and, in particular, please explain the priority order used when matching to the criteria

i. were the potential jury members asked if they had signed the 2018 petition, and if so how was this taken into account

j. given that age was one of the criteria, what was the mean age, median age and age range of (i) the sample frame and (ii) of the jury?

k. it appears that one presentation was given by a Palliative Care Consultant. Was any consideration given to seeking input from Geriatric Psychiatrists

l. what is the counter to the suggestion that bias was introduced by a disproportionate number of those responding to the invitation having strong pre-conceived opinions one way or another, and / or had more time on their hands than other people, and that these were factors in making them unrepresentative of the Jersey population

m. given that this is a simple binary issue (unlike the last referendum on the make-up of the States), why was a referendum not considered or will it be considered in the future

No one else has been involved or consulted in this request.

Response

A

Costs

a. what was the budgeted total additional cost of this whole activity in the business case (this should not include civil service salaries, usage of existing government property or IT)

The total budgeted cost for the Citizen’s Jury was £66,150.

b. what is the current projection for these total additional costs

£65,952 (ie marginally under the projected cost of £66,150)

c. how many civil service (or existing government contractor) man-days, not included in costs above, are projected to have been consumed by this activity (to include all planning activities, agendas, writing of minutes, engaging with academics and experts, contractual matters and attendance at events and so on

Exact hours working on the project by Government of Jersey employees were not logged, as all activities were carried out within usual contracted roles. Estimated hours spent on the project are as follows:

Senior Policy Officer: 19 weeks (FTE)

Head of Policy: three weeks (FTE)

It is estimated that to calculate the exact time spent on the project would exceed time limits under the Freedom of Information (Jersey) Law 2011 therefore Article 16 has been applied.

d. within the total costs, what is the budgeted or contracted subtotal cost of the academics providing support: the three ‘independent subject matter experts providing content oversight’ and the two ‘expert advisors’

There were no additional costs, these were not paid positions.

e. within the total costs, what is the budgeted or contracted subtotal cost of other academic or expert briefings supplied to the jury

There was no cost to the academic briefings, or speaker presentations. All speakers contributed to the process on a voluntary basis.

f. within the total additional costs, what is the budgeted or contracted subtotal cost of the ‘independent advisory panel’? Were they paid

There were no additional costs for the Independent Advisory Panel, these were not paid positions.

g. what further costs were incurred to pay for (i) jury member selection and (ii) all other additional costs and, if so, to whom and for what

The jury member selection was undertaken by the Sortition Foundation.

(i) Total cost for Jury member selection, including invitation mailout - £11,978

(ii) An additional associated Jury cost was the participant honorariums, at a cost of £300 per Jury member, across the 10 sessions attended. A total of £6,900.

All of the above figures are included with the total costs of £65,952 noted in response to question 1b.

h. if there are any outturns or projected outturns that are materially different from the budgeted costs, please identify these and explain 

There are no projected outturns that are materially different from the budgeted costs.

B

Methodology and Selection processes.

There is a lot more to the methodology of this complex exercise, but I have tried to limit this to key issues. The statements on webpage Citizens’ Jury on assisted dying in Jersey (gov.je) and the attached minutes are fairly imprecise about the various selection processes.

a. who, or what body, selected ‘Involve’ and ‘Sortition’ and on what basis? Please supply relevant documents

Involve and the Sortition Foundation were selected by the Government of Jersey as part of the formal tendering process for the project.

b. who, or what body, selected the three ‘content oversight’ academics (Profs Huxtable, Jackson and Jones), and using what criteria, and by what selection process? Please supply relevant selection decision documents

The Content oversight team was selected by the project team (Involve and members of the Government of Jersey policy team), in consultation with the Independent Advisory Panel. Prior to selection, the project team carried out extensive research, including communication with academics who were specialists in the topic area, and the selected candidates came with recommendation from other leading academics in this field.

They were selected on the basis of their subject matter expertise, and for their range of personal views on the subject - one who supports the introduction of assisted dying, one who is against the introduction of assisted dying and one who is neutral on the matter of assisted dying. For further information, please see the following link:

ID Expert Advisor and Content Oversight Roles.pdf (gov.je)

c. who, or what body, selected the two academic ‘expert advisers’ (Dr Mullock and Prof Ost)? What criteria were used and what was the selection process? For example, was one known to be, or from publications seen as, ‘pro assisted dying’ and the other ‘against’. Please supply relevant selection decision documents 

The expert advisors were selected by the project team (Involve and members of the Government of Jersey policy team), in consultation with the Independent Advisory Panel. They were selected for their subject matter expertise and their availability to commit the required level of time to the project. They were not selected for their personal views on the subject, as it was the role of the Content Oversight Team to scrutinise and sign off speaker selection and evidence heard in the sessions. Again, please see document outlining the content oversight advisor and expert advisor roles in (b) above.

d. in particular, what consideration was given in the decision that Dr Mullock and Prof Ost should act together as the ‘expert advisers’, when Prof Ost had supervised Dr Mullock’s PhD thesis Suzanne Ost | Lancaster University, which creates at least a perception of a lack of independence and possibly a lack of balance

The expert advisors were not selected to provide balance in terms of the topics covered and evidence heard by the Jury. The role of the expert advisors was to support jury members when hearing the evidence presented, with clarifying questions and explanation of technical detail, for example. Again, please see document outlining the content oversight advisor and expert advisor roles in (b) above.

e. who, or what body, selected those other people, academics, doctors etc. to give briefings, using what methodology and against what criteria? Please supply relevant decision documents

The Content Oversight Team (Profs Richard Huxtable, David Jones and Emily Jackson) supported from a deliberative process design and logistics point of view by the project team (Involve and members of the Government of Jersey policy team), were responsible for selecting the topics covered and evidence heard by the Jury. The suggested process for selecting evidence was also run past the Independent Advisory Panel at their meeting on 13 January, 2021. See speaker Criteria overview in the following link for further detail.

Jersey Assisted Dying Citizens’ Jury meetings (gov.je)

f. was the ‘independent advisory panel’ selected through open competition via an appointment process? If so, who oversaw it? If not, who selected this panel and on what criteria? Were they required to declare interests and / or pre-conceived views on the subject, and whether they had signed the 2018 petition?

Members of the Independent Advisory Panel were invited to the role by the Minister for Health and Social Services, they were selected on basis of their previous contributions to the community and their known ability to be impartial and to provide an objective voice to advise, check and challenge the Citizens’ Jury process.

Prior to commencing their role, all Panel members were asked to sign a Declaration of Interests Statement to confirm:

• I will undertake the role of Independent Panel Member in an objective and impartial manner

• any personal views I may hold on assisted dying will not influence my actions or decision-making in this process

• I will not discuss with other persons any personal views I may hold on assisted dying during the course of the Citizens’ Jury

• I am not aware of any actions I have previously taken / discussions I may have participated in that relate to the issue of assisted dying that may bring the Citizen’s Jury process or the Independent Advisory Panel into disrepute

They were also asked to list any affiliation with other organisations that may be considered a conflict of interest to the role. They were not specifically asked if they had signed an e-petition in 2018.

g. what is the evidence that the ‘End of Life Choices Jersey’ 2019 survey run by 4insight with 1420 responses was representative of the views of the Jersey population? And was this any part of the basis for the attitudes input (along with the UK 2017 BSAS) into the jury selection process in para h(iii) below

End of Life Choices Jersey commissioned independent research agency 4insight to carry out an online survey in 2019. Government of Jersey was not involved in this research and therefore unable to comment on the scope or methodology of the survey.

The Jury selection process undertaken by the Sortition Foundation used an attitudinal question based on the 2017 British Annual Social Survey, carried out by NatCen Social Research (Britain’s largest independent social research organisation).

The 4insight 2019 survey was not used as a basis for recruitment criteria, but the survey results did give an indication that attitudes of Jersey residents were broadly aligned with UK public attitudes on the matter of assisted dying.

h. The link above states: “The Jury was selected at random and demographically represents the Island's population.” The website states in various places that invitations were sent to 4600 addresses, of which 477 responded to register an interest and 23 participated in the jury. The first step is a broadly random process (I assume that the Chief Statistician generated 4600 addresses); the second in certainly not random, and nor is the 3rd step:

i. please justify the statement above that ‘Jury was selected at random…”

The Sortition Foundation employed a stratified random sampling method, or ‘civic lottery’ to select the 23 jury members from the 477 individuals who had registered their interest to participate.

The jury selection was a 2-phase process. The first phase involved sending invites to register interest in participating in the jury to 4,600 randomly-selected addresses (selected from the JLPI – Jersey Land and Property Index - using a random number generator).

In the second phase, The Sortition Foundation used their software product – StratifySelect - to perform the random stratified selection, to match specified demographics (as listed below), from the pool of 477 registrants:

•  age (source: Opendata.gov.je 2018 Population Estimate)

• gender (source: Opendata.gov.je 2018 Population Estimate)

• location (source: Jersey Opinions and Lifestyle Survey 2020)

• socio economic status, based on housing tenure (source: Jersey Opinions and Lifestyle Survey 2020)

• place of birth (source: Jersey 2011 census data)

• attitude towards assisted dying (source: British Social Attitudes Survey 34 (2017)

The StratifySelect software finds lots of different combinations of people that satisfy the demographic requirements noted above. It then weights the probability of each one, to give each individual as fair a chance of possible of being chosen. It then chooses one at random, by using software to generate a random number.

ii. what is the evidence that the jury bears any resemblance to being representative of the population?

The data used to ensure that the Jury was representative of the Island’s population was supplied by Statistics Jersey, from the following data sources:

• 2018 population estimate – age and gender of Islanders

• 2020 Jersey Opinions and Lifestyle Survey – location spread of Islanders by rural, semi-urban and urban areas and housing tenure (owner-occupier, social rental, qualified rental, and ‘non-qualified’ accommodation)

• Jersey Census 2011 – Place of birth

In addition, as noted in the response to question ‘1(f)’ an attitudinal question based on the 2017 British Annual Social Survey was used to determine the Jury members existing views on assisted dying.

iii. in the third non-random stage, given that the final selection was 23 out of 477 against the 6 criteria (age, gender, location, socio-economic status, place of birth and attitude), what methodology was used to select against the listed criteria and, in particular, please explain the priority order used when matching to the criteria.

As detailed in the response to question ‘1(h (i))’ The Sortition Foundation performed a random stratified selection, using their bespoke software, StratifySelect, to match specified demographics from the pool of 477 registrants.

When performing the random stratified selection, there is no priority order for the criteria. The software attempts to meet all criteria. Where this is not mathematically possible, the software identifies any criteria targets that may need changing. For example, if there were a disproportionally small number of women registering to take part in an event, Sortition Foundation may be required to relax the target for the number of female participants and accept that there would not be a perfectly representative sample with regards to gender. Sortition Foundation guard against this potential issue by sending 200 invitations for every one participant that they hope to recruit. This ratio makes it likely that they will reach (or very nearly reach) all the demographic targets.

In the case of the Jersey Citizens’ Jury on Assisted Dying, Sortition Foundation were able to meet (or very nearly meet) all the demographic targets. Where they were not able to meet the targets exactly, they were out by one or two people. For example, when selecting according to Tenure, the target was to have 13.3 Owner Occupiers and eventually 15 were selected. The target for Qualified Private Rent was 3.9 people and two people were eventually selected.

Whilst the random stratified sample process is never likely to achieve a 100% perfectly representative sample, it is clear that it is far more representative than a self-selecting group. This can be seen in the skewing on the attitudinal question. While survey data suggests that 20% of people are opposed to Assisted Dying, only 8% of those registering for the event held that opinion. The Sortition Foundation process boosted the voices of those with opposed to Assisted Dying to nearly 18% in the final selection.

Full recruitment data will be made available in the Final report on the Jersey Assisted Dying Citizens’ Jury. The Government of Jersey expects to receive this report in August and will publish the report in full on www.gov.je.

i. Were the potential jury members asked if they had signed the 2018 petition, and if so how was this taken into account?

Jury members were not asked if they had signed the 2018 petition. In order to determine their current attitude towards assisted dying, they were asked to respond to the following question (which is based on the BSAS 2017 survey):

Should the law allow voluntary euthanasia (assisted dying) by a doctor for someone with an incurable and painful illness from which they will die?

With response options of ‘definitely should not’, ‘probably should not’, ‘probably should’ or ‘definitely should’.

j. given that age was one of the criteria, what was the mean age, median age and age range of (i) the sample frame and (ii) of the jury?

We do not hold data on the mean or median age of the Jury members. The target age for Jury members (based on Statistics Jersey 2018 population estimate) was as follows:

• 65+ - 20.4%

• 45-64 – 34.3%

• 30-44 – 25.4%

• 16-29 – 19.9%

The actual age distribution for selected Jury members was as follows:

• 65+ - 26.1%

• 45-64 – 30.4%

• 30-44 – 26.1%

• 16-29 – 17.4%

k. it appears that one presentation was given by a Palliative Care Consultant. Was any consideration given to seeking input from Geriatric Psychiatrists?

The Content Oversight Team advised on the speaker selection. Consideration was given to a wide range of individuals with a position on the matter of assisted dying, including specific subject matter experts and a range of experienced health care professionals – please see the speaker criterial selection information on www.gov.je provided in the following link for further detail. Given the finite amount of time available for speaker presentations and the focus on jury deliberation, it was not possible to invite all those with a view on the subject area.

Jersey Assisted Dying Citizens’ Jury meetings (gov.je)

l. what is the counter to the suggestion that bias was introduced by a disproportionate number of those responding to the invitation having strong pre-conceived opinions one way or another, and / or had more time on their hands than other people, and that these were factors in making them unrepresentative of the Jersey population

As noted in the response to question ‘I’ those registering their interest in the process were asked to respond to the following question:

Should the law allow voluntary euthanasia (assisted dying) by a doctor for someone with an incurable and painful illness from which they will die?

With response options of ‘definitely should not be allowed’, ‘probably should not be allowed’, ‘probably should be allowed’ or ‘definitely should be allowed’. The Sortition Foundation selected Jury members to a target that matched the response to the question in the BSAS 2017 survey – this included the range of views for and against assisted dying, both strongly either way and those with mild or moderate views on the subject.

The British Annual Social Survey, carried out by NatCen, notes that in the UK 77% of people feel a person with a painful incurable disease should be able to legally request that a doctor end their life and that this level of support has been stable for over 30 years.

Moral Issuses - Sex, Gender Identity and Euthanasia

The 4insight 2019 survey indicates a similar response for Jersey residents, albeit with higher levels of support for assisted dying.

In addition, Involve worked to ensure that participation by all selected Jury members was inclusive. This included taking steps to ensure reasonable adjustments and acknowledgement of Jury Members’ varying needs were met to support their participation in the Jury process. This was made very clear in the invitation. This included the following things:

• to thank everyone for their time and effort we paid a Thank You Gift of £300 to all Jury Members, either as cash or through a voucher. This helps ensure Members feel valued for their time and goes some way to support those with less financial security or more restrictions on their time to be able to participate

• providing tech equipment and training if needed and support to get online if someone didn’t have an internet connection

• offering to cover care costs and other expenses incurred through the process

• all Jury meetings took place outside of standard working hours, on evenings and weekends

m. given that this is a simple binary issue (unlike the last referendum on the make-up of the States), and if the why was a referendum not considered? Or will it be considered in the future

The option for a referendum on the subject is a matter for the States Assembly to decide.