NHSBT Organ Donation Survey: A Critical Note

This weekend the Guardian reported that the NHS Blood and Transplant service is surveying opinions on how the supply of transplantable organs might be increased. Alongside the survey they have a portfolio of evidence (.pdf).

Whilst I encourage everyone who wants to complete the survey to do so I have a few criticisms. The first thing is that the survey asks you to classify yourself by checking a box. Most of the options are for some sort of professional (clinical and non-clinical) but the first option is 'member of the public' and, seprately, there is the item 'patient'. Also included is '(family of an) organ donor,' '(family of an) organ recipient,' 'someone on the Transplantation list'. I am not sure if the survey is really aimed at 'the general public' but the 79 page portfolio of evidence that one is supposed need to read before completing the survey is not exactly conducive to their participation. 

Furthermore it is not overly clear that the evidence offered really informs the questions being asked. Competently answering the first question, 'How do we get the best results for those listed for a transplant?,' is reliant on the respondents own expertise. The surveys requires responses to be ranked and subsequent questions, like 'How do we maximise use of every offered organ, and thereby maximise the gift of donation?,' require some knowledge of how the organ transplantation infrastructure is currently organised. Similarly for 'How do we ensure that everyone with the potential to donate is given that opportunity at the time of their death?' 

The questions that the lay general public might be able to insightfully respond to, e.g. 'How do we make organ donation a normal part of UK culture?,' or where their opinion might be thought to be ethic-politically relevant, as is the case with 'Do you agree that a person who has signed up to the Organ Donor Register should be a priority recipient for an organ if they subsequently require a transplant?', are numbers 5 and 8 in a list of 8 questions. I would think the average lay member, and the average lay (family of an) organ donor/ recipient, would have given up completing the survey before they came across these items. Thus I would have thought that if there is any serious attempt to include the views of the lay general public it may have been better to pose these questions first. 

Of course, therein lies the rub, just because there is space to identify yourself as a member of the public does not really mean the survey is, or ought to be, aimed at such respondents. This is one of the first steps in (re)forming organ donation strategy post 2013 and its seems reasonable to think that NHSBT might focus a survey on healthcare professionals and those with expertise in transplantation. This might also go someway to explaining why the portfolio of evidence is not overly accessible. Whilst pretty much every page is a graph there is no explanatory text. Furthermore the evidence does not really address the question being asked but, rather, presents the case for thinking that, first, the supply of organs does not meet demand and, second, that the supply of organs can be increased as other countries do better. What the evidence does not really do is help determine any answers to the questions asked. 

One thing in the portfolio of evidence did, however, jump out at me and that was the map of organ retrieval teams. I was surprised at how few of them there were. As I live in Belfast I feel entirely justified in pointing out that there is no team in Northern Ireland. There is also only half a abdominal retrieval team in Wales; shared between Cardiff and Birmingham. Other teams are spread across major population centres of the UK (Edinburgh/ Glasgow; Newcastle; Manchester/ Leeds; and a major cluster around London, including Cambridge). I am not sure what percentage of the population these teams serve, and the number will be variable depending on whether the donor is dead according to brain-stem or cardiac/ circulation criteria, but, particularly in the case of DCD, surely increasing the number of teams and the locations they work in will increase the number of transplantable organs? Mairi Levitt has written and talked about how the issue of organ transplantation and the need for donors creates a different dynamic to the debate as compared to, say, cancer treatments and the resources required to fund them. I wonder whether in our pursuit of the idea that the demand for organs can be met by increasing donation rates we neglect to consider how greater investment could increase the supply. 

Interestingly whilst one of the responses to the question 'What changes do we need to make to infrastructure, workforce, IT etc?' one of the answers is: 

'NHSBT should focus efforts and resources on those hospitals with the biggest potential for organ donation (e.g. busy neuro-intensive care units)'

There is no listing for 'Maintaining a greater number of retrieval teams at a greater number of locations around the UK.' As I have noted this survey does seem aimed at professionals involved with organ transplantation and/ or those who have some knowledge of the current arrangements and infrastructure. Perhaps there is some reason why this is not an option. But given that the organ in shortest supply is the kidney and the fact that it seems abdominal retrieval teams can be maintained in the absence of the more specialised cardio-thoracic retrieval teams it seems to me, a relative lay person, this should at least be considered. 

And, if I might be permitted to make one final point, it seems odd to me that although there is an item 'Faith Leader' there is no way for the survey respondent to explicit designate themselves a '(bio)ethicist.' I might be wrong but I would think a good number of academic bioethicists would respond to the survey; I am. Of course there is a text box for 'other' but the responder is still required to select one of the checkboxes. Given there is no box for '(non-clinical) academic' there seems only one reasonable response: member of the public. Elsewhere I have written about (.pdf) how I think confusing the bioethicist with the lay public is problematic. Hopefully this won't be too much of a problem here if bioethicists identify themselves in the other category so that their views can be analysed in isolation from the truly lay general publics and vice versa. Nevertheless, given the full range of clinical and NHS identieis available in the list, it does tell use something about how 

Update (31/7/12): After a bit more digging and some useful advice from a friend (thanks Ian!) I have found out that Organ Retrieval Teams referred to above are part of the National Organ Retrieval Service (.pdf) set up on the 1st of April 2010. These 13 teams are permanently on-call and, between them, cover almost all of, well, Great Britain. Each team covers an area that they can access with 3 hours. If a team is called out, and another donor dies in their area, the next nearest team is called. Given the information in the portfolio of evidence it seems that it is most common for there to be three donors attended by these teams per day (24% of the time). On 28% of days there are 0, 1 or 2 donors. On 47% of days there are 4-9 or more donors attended by the retrieval teams. (I am not sure where the other 1% has gone). On 74% of day there are 2 to 5 donors. 

The information provided suggests the vast majority of potential donors who were Brain Stem Dead attended by the organ retrieval teams subsequently became donors. However, depending on the team, between 37% and 50% of potential Cardiac/ Circulation dead donors do not go on to become donors (national total 43%).* Of course one would expect many DCD donors to not ultimately qualify but the variation perhaps indicates a need for more teams so that faster retrieval can be effected. What the information does not tell us is if there were any potential donors that could not be attended by any of the retrieval teams or if the time taken to get to them was significant in terms of outcomes (donation and number of organs donated). 18 donors were attended by local surgeons in Plymouth, Nottingham, Liverpool, Sheffield, Bristol, Great Ormond Street Hospital (London) and by an overseas team. All of these are major population areas, I wonder what the capacity in less major hospitals is and how the increasing concentration of specialist services in major hospitals will effect the ability of local teams to retrieve a donors organs. 

Finally, the information I have leads me to believe that the national retrieval teams do not cover Northern Ireland and that there are surgeons here who remove organs (presumably all potentially transplantable organs although only kidney and cornea transplants actually take place here - patients must go to Great Britain for anything else). However the donor and the organs harvested do not seem to be recorded in the statistical information provided by NHSBT. The total number of donors seems to match those attended by the National Retrieval Teams. I cannot think a Belfast team would be counted as an 'overseas retrieval team' nor that there were only two donors over the course of a year in Northern Ireland. We are only around 3% of the population but that would indicate that there should be around 30 donors per annum, if we are in line with the rest of the UK. 

* Note: I am assuming here that the all Cardio-thoracic donors are a subset of the Abdominal donors. These seems to be a valid assumption, and would indicate that most of the non-proceeding cardio-thoracic donors in fact become proceeding abdominal donors. But I am not entirely sure if I am reading this (.pdf) table correctly.