18.07.15 Genetics website

Question 1

Genetics websites are not stipulated by CPA but may be useful in delivering information to users.

Answer 1

Information for users and patients is to facilitate proper use of services, departmental policies, procedures and repertoire and it should be provided in a readable and manageable form.

Users particularly require information about the availability of clinical advice, as well as the scope and limitations of the service

Question 2

According to CPA, what information should be available to laboratory users?

Answer 2

Up-to-date information including:

1. Contact details of key members of staff
2. The location of the laboratory
3. Services offered by the laboratory
4. Opening times of the laboratory
5. Details of any out of hours service or shift system
6. Instructions for the completion of the request form
7. Instructions for transportation of samples, including any special handling needs
8. Availability of clinical advice and interpretation
9. The names and addresses of laboratories to which work is routinely referred
10. The laboratories repertoire including specimens required, sample volumes, special precautions, turnaround time and reference ranges
11. A list of key factors which are known to affect the performance of the test or the interpretation of the results
12. Time limits for requesting additional examinations

Question 3

What information regarding sample requirements should be provided?

Answer 3

1. The sample requirements for each test should be clear on the website.
2. Type and amount of sample required should be stated.
3. It should be clear on the website if prior arrangement for specific testing is required e.g. breakage syndromes – may need to receive a sample on a certain day in the laboratory.
4. Basic patient information should be provided both on the referral card and the sample tube so that the sample is uniquely identifiable e.g. at least name and date of birth.
5. Information about storage of samples during/prior to delivery should be detailed e.g. store in fridge, blood in EDTA, and place sample in transport media.
6. Any other specific information required should be clearly present on the website e.g. informing lab of high risk samples such as HIV, Hep B, consent forms, pedigrees required etc.
7. Link to downloadable referral form with instructions on how to complete including consent.
8. Link to regulations for transporting biological samples.

Question 4

How should the website be maintained?

Answer 4

1. Requires a website manager.
2. The lab should have a procedure for the maintenance and updating of the website content.
3. The website should be checked regularly to ensure it is working – this should include checking that all links work.
4. The website should be updated regularly to ensure that all information in it is current and relevant. Having a ‘last updated’ feature on the site provides user with confidence that it is relevant.
5. Also useful to check the website can be found via Google as this is most likely how users will access the site.

Question 5

What test information should be included on the website?

Answer 5

1. Details of tests provided by the laboratory should be included on the website e.g. full names, abbreviations of disorders, genes involved, OMIM number links.
2. A brief description of disorders tested for may be provided.
3. Details of tests should be provided: the test method used e.g. MLPA, QF-PCR, FISH, guideline/predicted reporting times of the tests carried out and any other information that may be useful to know and which may affect results e.g. consanguinity, transfusions, transplants, previous pregnancies.
4. Any testing criteria (and proforma needed prior to testing)/required specialism involvement e.g. involvement of a clinical geneticist.
5. Details of test costs should be detailed where appropriate for e.g. private patients.
6. It should be made obvious on the website where to send samples.
7. Information regarding specific dates should be kept up to date.
8. Who to contact for further information on a particular service.

Question 6

What information can be included on the website to promote its services?

Answer 6

Recent publications

Presentations and awards

Question 7

What general areas should be covered by the laboratory website?

Answer 7

1. Up-to-date contact details of relevant lab staff members should be available and also contact details and location of Clinical Genetics services. Opening times should also appear.
2. A brief description of genetic tests available should be provided with a brief overview of tests carried out in each section e.g. prenatal or oncology.
3. Details of schemes, which the laboratory participates in, should be provided-NEQAS etc.
4. Links to other relevant, reputable and trusted sites can be included and may be useful e.g. NEQAS/UKGTN/OMIM.
5. Details of any education, training and research opportunities and latest developments.
6. It may also be useful to have links to PDF versions of referral cards etc.
7. Referring centres for the laboratory within the NHS could be included.
8. Access to a user feedback form online may be helpful for the laboratories on-going service improvement.
9. It may be beneficial to the laboratory to detail any job vacancies available on the website.
10. Links to Quality Policy/quality manual and current accreditation status