Information Packs

In addition to or as an alternative to online materials, it can be useful to deliver physical copies of information to medical professionals. The following steps are important when writing, publishing and distributing information in a physical form:

  1. Making a start: It may be useful to set up meetings with your group to discuss the purpose and target audience of the information packs. When starting out you should have a good idea of the information you want to include and the format of the material (e.g. poster, leaflet or booklet). You may also want to plan who will review at each stage of writing.
  2. Writing: While developing an information pack will typically involve patients and families, it is important that a medical professional reviews the information to ensure it is medically and scientifically correct. This will ensure credibility and increase the likelihood of medical professionals reading and trusting the information.
  3. Publishing: Consider seeking out experts on publishing medical information for a wide audience. There may be costs associated with the publishing and printing of the information, therefore it may be useful to see if there are any grants available to help fund this.
  4. Distribution and delivery: There is a significant cost associated with posting or delivering information packs, especially if you wish to target medical professionals around the country. If a grant is not available to help fund this, consider fundraising or asking local companies to sponsor the delivery of the packs. Make sure your packs will be delivered to your target audience!
  5. Success: It is a good idea to evaluate whether the information packs have been useful for the medical professionals by asking for their feedback. If it has been successful, you may want to regularly deliver up-to-date packs or reach out to more medical professionals. If it has not been successful, you may want to consider changing the format or choosing a different platform to raise awareness.


Case Study: Wolfram Syndrome UK and CDG Awareness Campaigns

Charities including Wolfram Syndrome UK and Congenital Disorder of Glycosylation (CDG) UK have successfully distributed information packs to medical professionals across the UK, in order to raise awareness of the conditions. Wolfram Syndrome UK set up an Awareness Campaign consisting of a charity road trip delivering 400 information packs to 25 of the main children hospitals in the UK in 58 hours. The road trip was a success, as new patients have since been diagnosed with the condition due to increased awareness of the disease.

Similarly, CDG UK sent 200 information packs to neurologists and metabolic centres at 25 hospitals across the UK. Since then, they have received requests back from hospitals asking for more information packs, and metabolic nurses have become more involved in raising awareness of CDG.