Lifeline Wales: experience with a computerised kidney doner registry
BMJ 1994; 308 doi: https://doi.org/10.1136/bmj.308.6920.30 (Published 01 January 1994) Cite this as: BMJ 1994;308:30
- J R Salaman,
- P J A Griffin,
- J Haines
- Accepted 12 August 1993
In the United Kingdom about 60 people per million of the population develop chronic renal failure each year and are accepted on to dialysis programmes, but barely half will receive kidney transplants.1 The shortage of donors is aggravated by the reluctance of relatives to consent to donation in one third of cases.2,3 Relatives seem unable to give consent when the donor's wishes are not known. To address this problem various attempts have been made within the United Kingdom to record the wishes of potential donors. Computer registries can retain such information long term and can operate as an extension to the donor card scheme without a change in the law. Lifeline Wales is the largest such scheme in the United Kingdom, and this paper describes its operation over the past six years.
Methods and results
In 1983 a computerised organ donor registry was set up at Manchester University.4 Local intensive care units checked the database using personal computers and modems whenever they had in their care a potential organ donor whose wishes were not known. In 1986 the scheme was extended to Wales with funding from the Welsh Office and the Kidney Research Unit for Walsh Foundation. Special bilingual donor cards were sent to 1.2 million Welsh homes in 1986, with regular distributions since. The card had a small tear off portion identical with the standard donor card, and this was retained by the person. The other part was returned to the registry office of Lifeline Wales, where personal details were transferred to magnetic tape and sent to Manchester for entry into the computer.
In 1990 the Manchester computer ceased operating and the Lifeline Wales database was transferred to Cardiff. Because the computer terminals in the 15 intensive care units in Wales were seldom used they were withdrawn from service in 1990. Staff now check the database by consulting the scheme's transplant coordinators (WR and JH), who have their own terminal. The donor card was also modified to include a question on blood donation.
One year after launching Lifeline Wales 100 000 potential donors had been registered. The accrual of names has been more gradual since then, reaching 290 640 by January 1993 (figure). About 17 000 new names continue to be added annually. Before 1986 there were about 35 donors each year. Two years after the launch this had increased to 44 donors (representing 20 donors per million of the population), which was the highest regional procurement rate in the United Kingdom. However, only 38 donors were found during 1991 and also 1992. Fourteen people who had registered with Lifeline Wales subsequently died and became organ donors. In none of these cases was the registry consulted because the person who died had been carrying a donor card and his or her views were already known.
Registrations with Lifeline Wales every six months from 1987 to 1993
Comment
Whether Lifeline Wales has influenced rates of organ donation in Wales is difficult to say because Wales has traditionally scored well: in 1991, for example, it had the third highest donation rate in the 16 regions of the United Kingdom.5 Although nearly 300 000 people have registered, this represents just 14% of the adult populatation and is somewhat less than the proportion (20%) of people who carry donor cards in the United Kingdom. The recording of attitudes to blood donation has been more successful. Most registrants agreed to be blood donors. In 1992, 2176 names were offered to the blood transfusion service, which subsequently obtained 2181 extra units of blood.
Over the next 10 years the donor registry is likely to enlarge by another 150 000 names. At present, however, it is too small to have a substantial effect on the numbers of donors.