User seminar September 28, 2009

A user seminar was held on September 28, 2009 at the department for child neurology at Astrid Lindgrens Barnsjukhus, Huddinge (Astrid Lindgrens Barnsjukhus is formally a part of Karolinska Sjukhuset). The aim of the seminar was to discuss requirements on Drugle from the perspective of working doctors and nurses in child neurology, in particular in the area of child epilepsy. Daniel Rodríguez lead the seminar.

Participants:

Name Role/function
Daniel Rodríguez Technical manager, Seibo.
Paul Cohen Technical manager, Seibo.
Professor Dr. Lars Gustavsson Project sponsor. KI (Karolinska Institutet).
Dr. Katarina Wide Doctor at the department for child neurology at Astrid Lindgrens Barnsjukhus.
Nurse Lena Åström Nurse at the department for child neurology at Astrid Lindgrens Barnsjukhus.

Purpose

To gather initial requirements on adapting Drugle to the needs of health care personnel in the area of child neurology, in particular child epilepsy.

Agenda

1. Introduction to Drugle and demonstration of Drugle in action.

2. Discussion regarding the requirements on Drugle from the perspective of child neurology. In particular:

  • Data and information sources.
  • What sort of searches are they interested in? What combinations of search terms will they use?
  • How should search hits be presented? Additional information?

Data and information sources

The following data and information sources were identified:

  • Patient Information Leaflets (PIL) (Swedish: Bipacksedlar).
  • Guidelines (Svenska: Vårdprogram och riktlinjer).
  • Library Search Service at Karolinska Institutet.

There is an lack of structured data sources for evidence-based information in the area of child epilepsy.

There exist Sweidsh guidelines at both national and regional levels for various medical areas, but documentation in the area of epilipsy is lacking.

Searches and search terms (for health care professionals)

The main informational problem relates to dosage and formulation, primarily due to use of drugs that are used outside of their approved indications. I.e drugs being used to treat epilipsy that are formally registered and approved for other conditions and diseases.

  1. Dosage and formulation (Swedish:dosering och beredningsform).
  1. Interactions and side effects.

Typical search terms:

  1. Drug or generic name.
  1. "dosering" (English: dosage).
  1. "biverkningar" (English: side effects).
  1. "Interaktioner" (English: interactions).

Searches and search terms (for patients and relatives)

On order of relevance:

  1. Undesirable effects. Especially serious undesirable effects.
  1. Dosage, usage and formulation.
  1. Interactions.

Presentation (To health care professionals)

Important:

  • Links to relevant PubMed articles.
  • Images for drug identification.

  • Links to, or contact information for, relevant contact persons at the producer (drug company) of the drug(s) in question.
  • it is desirable to have as much information available in the search hit list so that the user doesn't have to click on links to see if they are relevant.
  • Visual hints in the form of well designed icons is desirable!

Presentation (To patients and relatives)

Important:

  • An important caveat is that side effects is dependent on dosage and individual predisposition. This should be highlighted in some way.
  • For serious undesirable effects a warning/recommendation display should inform the user to immediately contact a doctor/health service personnel.
  • Multi-language support (many immigrants and second generation immigrants).
  • Images for drug identification.
  • Important notice: If a drug has been prescribed by a neurologist for children < 12 years it is okay, even if the indication or standard recommendation does not explicitly say so! This is a common cause of concern for parents when the buy/collect drugs at the pharmacy (Swedish: Apoteket).
  • Links to relevant health care patient organizations.
  • For these users it is desirable to have a the display as simple as possible.
  • Visual hints in the form of well designed icons is desirable!

Comments after the seminar

Daniel suggested that document sources using the ATC code "Antiepileptics"/"Antiepilepitka" could be given higher relevance rating