Postgraduate Medical Education

DRAFT

EDUCATION OF HEALTH SERVICE MANAGERS

30 April 2003

THE WELLCOME TRUST LONDON

Workshop report

1Introduction

Background

1.1The workshop on genetic education for those involved in managers education was the final stakeholder workshop in the Project. Invitations were sent out widely to Chief Executives of Strategic Health Authorities, Chief Executives of teaching Primary Care Trusts, Chief Executives of NHS Trusts with genetics services, a selection of managers of cancer networks and managers of maternity services, key contacts of the PHGU and managers notified by members of the project steering group. The participant list for this workshop is given in Appendix 1.

Purpose

1.2The purpose of the workshop was to build on the findings of the Background Report Education in Genetics for Health Professionals, which sets out the policy background on genetics education in health services within the UK. It reviews current education with respect to needs, roles and responsibilities, effectiveness of educational methods and current provision, and it outlines opportunities and barriers to developing education. In general terms this had concluded that the emerging prominence being afforded to genetics within the UK and the expected Government Green paper on genetics meant that there were current opportunities to develop an educational programme across the health professions. At the same time substantial barriers and problems existed:

Perceived lack of relevance of genetics and low levels of priority
The complexity and breadth of the subject area
The multiplicity of educational methods which would be required to meet different learning styles and the long timescales to achieving genetic competence
The many different providers of educational programmes, with the lack of coordination between them
High levels of pressure on educational curricula with resistance to including more topics
Limited number of specialists available to provide education across the whole subject area
The purpose of this workshop was to increase our understanding of the issues around developing education in genetics for a wide range of health service managers and to make recommendations on the topics that would be a priority, the priorities for organisational and educational resources that would achieve this and the most important components to aid implementation.

2Method

2.1The workshop was conducted in the following main phases:

Presentation of background to the project and overall project structure
Presentation on breadth of genetics for health service managers
Presentation on the perspective of users
An opportunity for each group member to describe their special viewpoint and to put forward any further concerns about issues that would have to be addressed.
A prioritising exercise "nominal group process" in two groups to look at clinical and teaching priorities
Summing up and discussion of next steps

3background information

3.1Hilary Burton presented a summary of the background to the project and the initial findings relevant to health service managers. This presentation is included at Appendix 2. Of special relevance to managers were the findings that there is no formal training in genetics for managers throughout their careers.

3.2Managers have roles in genetics, as for other new technologies which include:

Presenting information on evidence, opportunity costs, resources, risks and benefits and facilitating a wide debate with key groups and public
Balancing competing demands and needs
Commissioning and providing services
Overall responsibility for education of workforce

(Institute of Healthcare Management 2000)

3.3Managers are currently being presented with developments in genetics which include:

Developments in specialist services
New technologies
Models for genetics in primary care
New genetic screening programmes
Clinical governance-good practice throughout healthcare
How will pharmacogenetics be set up?
How will health promotion look in the future?

3.4Some recent initiatives in education for health service managers have included:

Institute of Healthcare Management – discussion paper 2000
BAMM: seminar at genetics conference
PHGU Genetics and Health Policy Course five day course on alternate years
Institute of Medical Genetics at Cardiff annual two day course aimed at Public Health and Primary Care
GIG has run workshops for managers
Local services have held meeting with commissioners

1.4In addition the Department of Health has recently asked the PHGU to work with the Genetic Testing Network to developing a genetics education programme which builds on the GenCAG guidance to PCTs, “Genetic Services: a Guide for Primary Care Trusts” (2002/24). This will aim to raise knowledge and awareness of genetics in relation to commissioning. The programme will take the form of a series of one day workshops developed interactively with local managers and providers based on DHSC covering range of issues related to genetics.

4breadth of genetics for health service managers

4.1It is important to base education and awareness raising in genetics around the needs of those people for whom the service is being provided and some examples were given of these. Genetic conditions can arise from an error in the chromosomes, detectable by microscopy, or from an error in single gene which would need to be detected by a DNA test. These are the diseases that the regional genetics services are mostly concerned with at present. Then there are a large number of diseases that can be encountered anywhere in the health services where there is a genetic predisposition. This latter group would include asthma, hypertension, spina bifida coronary heart disease and many others.

Genetic services in the health service

4.2Genetic services were designated as a specialised service for commissioning purposes. This means that the services do not have to deal with each individual Primary Care Trust (PCT) but with one specialist commissioner. The Strategic Health Authority keeps an overview of this process. The definition stresses that it is an integrated clinical and laboratory service which provides for patients with, or concerned about a disorder where there is a significant genetic component and their families. This means that regional genetic services differ from other services in the fact that they are concerned with many people who are not ill. Many, such as those with learning disabilities come to the clinics for purposes of diagnosis.

4.3Genetic services are currently organised in regions, serving populations of between two and five million. They usually have a clinical genetics team that undertakes outreach clinics throughout the region, rather than just being based at a centre. They will include a rapid response service for people with abnormal test results such as may be discovered by amniocentesis. The laboratories serve the whole population and include cytogenetics and molecular genetics laboratories. Genetic tests require a lot of interpretation and thus there is an important requirement that laboratories interface with clinicians. In addition, laboratories and clinical genetics services are usually fully integrated with university departments so research and development and translation are important aspects of the work.

4.4Clinical geneticists are physicians with a background in medicine and/or paediatrics who have undergone a period of further specialist training and usually some research as well. There is a masters programme for genetic counselling in Manchester, which was one of the first in the UK. The DH has recently provided more money to increase the numbers of genetic counselling training programmes, recognising that the emerging profession of genetic counsellors will be a key to the dissemination of knowledge throughout the health service, particularly making links with primary care.

4.5Genetic disorders affect all ages and all systems. Genetic services are important in diagnosis of disease (eg Duchenne muscular dystrophy) or in determining risk for carriers of genetic disease having affected children through prenatal testing. Referrals to genetics are about 50% from primary care and 50% from elsewhere in the health service, meaning that many "tribes" within the health service need genetic competence.

4.6Many common diseases, such as heart disease, diabetes and asthma have a genetic component that is probably a variation, rather than a mutation. This would imply that it does not completely disrupt the function of the gene but alters it, thus predisposing the individual to disease. The idea of wide predisposition testing through "gene chips", which run a huge array of tests and give individuals a profile of future disease risk, are much further in the future. The usefulness of this approach is predicated on the assumption that people will alter their lifestyle according to this sort of advice about risk, a view that is probably simplistic given the difficulty in persuading people to do this on the basis of known risk factors such as smoking. However technologies for multiple gene testing may help us to understand and categorise disease

5The patient viewpoint

5.1The perspective of the family may not only include those with the rare single gene disorders. Patients note that there is a lack of recognition of the issues of genetics in the management of their conditions.

5.2Patients have difficulty in getting a diagnosis; there may be a misdiagnosis or a missed diagnosis. This is increasingly important where there are opportunities for treatment or amelioration of their symptoms.

5.3There is also a problem with services that are partial - either incomplete or biased. For example, a dermatologist might not recognise genetics aspects of a patient with neurofibromatosis. A recent project undertaken by Ian Hopkinson, who lectures in community genetics at the Institute of Child Health, looked at information in primary care records which clearly showed there was a familial component to the conditions and found that the number of instances in which that information should have effected the management strategy but was missed was significant.

5.4Families have a problem in getting accurate and appropriate information so that they can understand what their condition is and what it might mean for them. Managers could think about how accessible are all the databases that are used. Contact-a-family is a good example, having a huge database of support groups for people with genetic conditions. But this database may not be accessible from the District General Hospital or from the primary care surgery. The NeLH, which is currently under development, could be a useful resource.

5.5Patients with genetic conditions are not unreasonable – most are too reasonable and will accepts that they have to "tell their story" to many different professionals. They hope that they will talk to each other but do not expect everyone to be experts. Where clinicians do not have the necessary knowledge patients expect to be referred appropriately.

5.6Patients also want coordination. Multi-disciplinary working needs to be coordinated. Often the patient or parent has to do the coordinating, which is time consuming and requires a level of assertiveness. There is a need for a “ring-master” who will support families by providing an infrastructure to their care. From the management point of view this could be achieved by joining up the record systems so that different specialists are aware of each other’s involvement with the individual.

5.7Patients also want good continuity of care, especially where transfers are made from paediatric to adult services or between other services. Cystic fibrosis or muscular dystrophy are good examples where children used to die in early adolescence but now live on into adulthood and patients experience a problem in transfer from paediatric to adult services. There is often a lack of continuity of care, within a specialism because of the high staff turn over and poor record keeping. Managers need to think about how all these experiences can be improved.

5.8Inequality across the country is a problem with family conditions where family members are in different geographical areas. Appropriate protocols needs to be developed so that services are consistent.

5.9Families are often not told about the existence of support groups. Not all families want support groups. However, where patients have rare disorders, the community support, and sympathy that is available for those coping with commoner conditions such as diabetes is simply absent. Support groups can put people in touch with others who understand the particular rare condition, empathise with the problems that arise from it, and provide shared help in dealing with practical aspects. There is a role for GIG in developing the ability of support groups to respond, but a partnership with the statutory services that builds mutual confidence and mutual capacity would be advantageous.

5.10Families also want services to recognise that the understanding of genetic conditions is developing and changing rapidly and new possibilities arise. Families are concerned when they have conditions where options have changed over the years that there may be missed opportunities to intervene if professionals are not aware of the possibilities. There ought to be a “right of return”.

5.11There also needs to be a recognition of the fact that, as children reach adolescence, they need advice for themselves, which more appropriately comes from the service, than from the parent. An offer from the NHS for a discussion as the child reaches the appropriate age would be welcomed by parents. The other side of this is also to recognise the difficulties experienced by parents, but who are suddenly excluded from discussions once the child becomes 16. Managing the transition of these shifting responsibilities needs to be planned.

5.12It is important to ensure that the system delivers all these aspects of care in a coordinated way rather than relying on the individuals within it. Continuity of care needs to be in the system rather than “in the head of the person who last saw the patient”. Development of the systems and protocols would also ensure continuity is maintained where there is a high staff turnover, and individuals reported this – as jobs are very demanding and tend to be quite lowly paid.

5.13Valuing the time of the patient is central to much of this rather than setting up a system which is for the convenience of the professionals. Time spent going to many different services is expensive for the patient, both emotionally and financially, in terms of travel and time off work, childcare.

5.14In summary, the clinical encounter between professional and family will be most effective when the three universes of the personal medical record, the general understanding about the disease condition and the specialist understanding of options for that patient are brought together. From a user's perspective the responsibilities of management include:

Coordination so that the different elements of the service know about each other and understand each other’s roles
Communication so that professionals talk to each other and with patients and families,
Competence – the training issue so that they know what to do and how to do it
Comprehensiveness and so that patients do not fall through the net and miss out on important aspects of their management
Clinical effectiveness – the welding together of the three universes mentioned before

5.15There is an opportunity to be radical with education, delivering it to the desk of the manager rather than through traditional training routes.

6other Current initiatives in management education

6.1The Health Services Management Unit within the University of Manchester is an important provider of education in for managers. The Unit has been aware of the importance of genetics for some time and has included a section on genetics within the wider remit of their national courses, which cover such topics as human resource management. Most recently this was undertaken by Dian Donnai and was similar to the presentation given at this workshop.

6.2The Northwest Genetic Knowledge Park also has a main research theme around professional education and public engagement. As well as a masters programme in genetic counselling there is a new MA in Genetics, Culture and Society, based at the University of Lancaster, which is a partner in the Knowledge Park. In the University of Manchester there is an MA in Healthcare, Law and Ethics. New initiatives try to develop educational resources and run modules for oncology nurses from cancer units and cancer centres, starting with breast and bowel cancer. The Knowledge Park is also developing a communications skills course aimed at genetics specialists and other health professionals through Helen Middleton Price, who is the Director for the KP. This will develop skills in professionals involved, for example in research, to improve their ability to communicate with the public. There will also be facilities for genetics support groups to have meetings, which will provide a focus for these activities in the north of England and also develop links with schools.

6.3One of the remits of the genetic testing network will be to offer the facility to evaluate genetic testing such that the clinical utility and the informed prioritisation for a test to be brought on line or funded by commissioners can be set out. There will be a mechanism for the network to inform commissioners whether a specific test has good clinical utility and there should be support for funding. This can also be a mechanism for educating. The network will also provide an information resource on genetic testing. There will be a website and a discussion forum for commissioners to discuss how they can coordinate commissioning of these prioritised tests. This is not for all genetic testing, but for rare tests. There will still be, within the regional genetic centres, testing for core diseases such as muscular dystrophy, cystic fibrosis and Huntington's disease. Thus, the network is an initiative for rare diseases. However, if there were a need, the evaluation of testing for core diseases could also be carried out.