Right to information
I believe as a patient I have the right to know about my medicine. It angers me that health care professionals think that they have the sole right to know about medicine and that the knowledge should be regulated. This leads to information assymetry, is patriarchial and elitist. Patients ARE NOT stupid, we are the ones who have the medical problem and we therefore have the right to be equal partners in the treatment of our condition.
If this means that I have to take the SPC of a medicine to my doctor to ensure he or she considers all the options, then so be it. The GP still has the right to not prescribe the medicine if there is a medical reason. However, far too often they prescribe based on economical reasons (i.e. old drugs that are cheaper and not as effective or has more side effects).
So for me, having the SPC and PIL available online is essential, MINIMAL information for a patient.
Having it on the MHRA website makes sense because the links to reporting and other useful information is right there.
Why the contribution is important
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Datapharm, a not-for-profit organisation established in 1977 to publish regulated information about medicines, conducted a survey in November 2009 into the information needs of medicine users. The survey was conducted in collaboration with a number of voluntary organisations, including Macmillan Cancer Support, Arthritis Care, Diabetes UK, Rethink, Epilepsy Action and the National Osteoporosis Society. More than 450 people with long term conditions completed a detailed online questionnaire regarding their medicine information needs.
The following are headlines from this research. Those people surveyed rely exclusively, or to a large extent, on the following top 3 sources for their medicines information (in decending order of importance) - the PIL, a recommendation from their doctor, Google. While the PIL contains the 3 most important pieces of information needed by patients, the next 3 pieces of information in order of importance are not available from the PIL. And once people find information online about their medicine, 65% discussed the information with their health professional and 24% changed a treatment decision. We are happy to share more results of this research.
It is clear that people want access to information and are using what they find. We therefore strongly support the MHRA's ambition to make information about medicines widely available through SPCs, PILs and other means. We look forward to working closely with the MHRA to find the best and most economical way of achieving this goal.
Posted by Lawrence Berry (lberry@medicines.org.uk), Datapharm CEO.
Datapharm publishes the eMC (emc.medicines.org.uk) and provides the information about medicines used by NHS Choices (nhs.medguides.medicines.org.uk/nhs/default.aspx)
From a patient standpoint, I agree with the previous comments. There is a proliferation of unconfirmed generic and commercial information which tends to obfuscate rather than inform the end-user. If we are to provide informed consent to the acceptance of alternative medication, we require access to transparent information subject to appropriately authorized governance. Information provided should be identified as to sources and degree of validation confirmed by peer review and access to a glossary of technical terms would also be of value to the non-health-professionals.
Some companies, particularly those that market generic drugs, do not put their information on the eMC and they do not readily make this information available.
With all companies there is often a gap between the reciept of the Marketing Authorisation and the launch of the product. Often information regarding the SPC or PIL is not released during this period.
If the MHRA published this information then this is a further step towards freedom of information.