There have been many other essential components in developing and taking the first few faltering steps of this Cancer Genetics Service for Wales. One of the other crucial elements to our successful first few years has been the key input from our cancer genetics research team. Within our research strategy we targeted several key areas, including information technology, education and psychological interventions, within novel service structures. A key element within our research strategy has been our 'crystal ball gazing' attempts, looking ahead perhaps 10 years to the future and trying to predict what important developments are likely, and what may be needed. After many enjoyable sessions gazing into the future, we felt that we would share with you one such session in the form of the scenario outlined in Box 9.6.
Box 9.5 Videoconferencing
A pilot study of telegenetics
Videoconferencing ('telegenetics') is used to:
• Provide specialized healthcare advice to remote clinical sites.
• Meet the increasing demand for specialized service provision.
• Expand our capacity to give information at sites distant from the main specialist centre.
• Standardize technology. In addition:
• Evaluation showed a high level of patient and doctor satisfaction, and a reduced level of nurse satisfaction.
• Work has to be done regarding the doctor/nurse counselling process at it alters the roles of the individuals involved. Telegenetics is an innovative and potentially cost-effective means of increasing contact with distant sites that require specialist service provision.
• Comments from patients:
'I found the experience very reassuring and would certainly recommend this method'. 'Initially, you are aware of the TV but afterwards forgot about it.' 'As TV is a medium that I am used to, it is quite usual to receive information from the television'. 'I do prefer this method of consultation as I do not like going to hospitals and sitting in overcrowded waiting rooms with many sick people, for an indeterminate length of time.'
Development of a web-based data entry system across Wales.
Box 9.6 One possible future!
It all started just after we moved house and I had to register with the Virtual Health Centre down the road. Every new patient registering must submit a blood sample (which, of course, is stored for possible DNA analysis) and is also required to complete a detailed family history, even to the extent of submitting the details of any relatives' Virtual Health Centres too. It means they can all hook up electronically and send our family histories to and fro - which is common sense I suppose.
I had a number of cancer concerns when I went to the Virtual Health Centre for the first time. I had a bit of a family history of breast and colon cancer, but what really made me worry was all the scare stories in the media about brain cancer and 'mobile dementia', which was caused by the last generation of mobile phones you know, stories about breast cancer being caused by roll-on deodorants, cancer-causing electricity pylons, and so on and so on. When I went first, my intention was to ask to be referred to someone who could test me and tell me if I was definitely going to get cancer when I got older.
The Virtual Health Centre has a state-of-the-art link-up with the Cancer Genetics Centre (CGC) in Cardiff. It is the main cancer genetics centre in Wales now, though there are skeleton services available in west and north Wales. Cancer genetics used to be part of the Institute of Medical Genetics, but after the completion of the Human Genome Project in 2003 and the subsequent discovery of a whole range of cancer genes, including BRCA3, BRCA4, OV7, OV8, PROST45 and PROST57, the demand for cancer genetics services really escalated and it made sense to separate cancer genetics from the rest of the rare genetic conditions that the Institute deals with.
This link-up from primary care to the CGC all started in 2005 when the government decided that everyone should be equipped with the latest technology - a laptop computer for every member of the primary healthcare team, all referrals to specialists be done by e-mail, and every specialist to develop their own website dedicated to 'clinical management' with links back to primary care.
The CGC website has information about the entire cancer genetics team. There are about 20 people working there already and they seem to be a mixed bag of nurses, psychologists, sociologists, IT people and lawyers. With shared decision-making all the rage these days, my GP and I looked at all their personal profiles and eventually chose the one I thought I would be most compatible with as my key worker. The rest was easy then and we simply e-mailed, requesting a referral.
Before our referral was accepted, we were directed to the section of the website that deals with family history and risk assessment. All sorts of risk tools are now up on the CGC's website and they are each ranked according to how quickly they assess risk, the reliability of the data they use, and how useful others have found them. My doctor and I went through my family history together to see if I was at significantly increased risk for any of the main cancers, and to see what genetic tests were available. We decided that I was at moderate risk for these cancers compared with the rest of the population. That really worried me, but luckily there was another bit of the website that did psychology - employing various techniques and even giving us access to real-time on-line counselling.
Almost immediately after my doctor and I e-mailed the CGC, we received an appointment for a video link-up with the genetic nurse for the next morning. It's great not having waiting lists any more! Most of the video-link appointment involved going through my completed family history forms and double-checking for errors. Obviously, they asked whether I had thought through the implications of having a test and what I would do if I discovered that I did actually have one of the BRCA or COLCANCER genes. They had to warn me about the insurance and employment implications too.
Even though the Genetic Discrimination Act has been in force for many years now, most insurance companies do everything they can to find out about your predispositions. Most employers realize that the chances of their employees getting some form of cancer are huge but they have to cover themselves in case there is an environmental (i.e. workplace-induced) connection too. After the initial video-link discussion, I opted for a home visit to be 'blooded' - for those of you who don't know, the nurses still use this traditional term even though they collect saliva and hair now. The discovery that breast cancer could be diagnosed with a hair sample revolutionized the perception of genetic testing.
When I finally got an appointment to actually go to the CGC, I was assigned a code. They said every new patient needed a code because of the huge number of research studies that were running with people referred into the service. I was only allowed to be admitted into three research studies while I was a patient, but they said that once I had been discharged from their system, there could be an unlimited number of requests to take part in retrospective studies. Increasingly, researchers have to pay patients to participate in their studies, so I hadn't realized this would be quite so lucrative. In fact, I needn't have bothered applying for Big Brother 2011 - now in its tenth year and with prize money of £1 million - if I knew I could get a bit of extra cash just by having a few cancer concerns. Anyway the research projects I chose were: (a) analysing non-verbal communication during the counselling process, (b) improving my coping strategies and, of course, (c) telegenetics.
The telegenetics project means that I get to see extra people to talk about my concerns, though obviously not face-to-face. They now hook you up remotely with each member of staff - the nurse, the psychologist, the lawyer, etc. - to go through the issues from every possible perspective. Admittedly you are accompanied by a specialist genetics nurse at each stage so you have that 'continuity of care'. Ever since an earlier research project showed that nurses do it just as well, most specialist services are trying to cut back on their consultants. It's just like maternity services now - you never see a consultant until something goes wrong. Still, the nurses have more experience, it feels like they really know what they are talking about, and it's nice to have their company throughout the different sorts of counselling.
Anyway, I've had my genetic counselling - both face-to-face and by teleconsultation. I've talked to every possible professional there is about the implications of having a genetic test. I have learnt about coping strategies and all sorts of distraction techniques. I've filled in piles of surveys and participated in every focus group going. I think I'm ready. I'll do the test.
Acknowledgements: With thanks to Rachel Iredale for producing the scenario. REFERENCES
Genetics and Cancer Services Working Group (1996). Working Group for the Chief Medical Officer on Genetics and Cancer Services. London: Department of Health.
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