Taking Part in Market Research

SUZANNE O'CALLAGHAN
Suzanne O'Callaghan is Policy Research and Education Manager, Haemophilia Foundation Australia

With so many new clotting factor products now coming on the market, you may have noticed that market research companies are actively looking for patients and parents/carers to interview or survey about their bleeding disorder or their treatment. But is it a good idea to take part?

WHAT ARE THE PROS AND CONS?

Taking part in market research studies can be valuable for you and for others. In Australia research has a big influence on decisions about health services, treatment and care. If you participate in research, you can have your say on treatments, how they are packaged or presented, and their patient support programs, when you or others might be using them in the future.

But before you take part in a market research study, it is important to know more about its benefits and risks for you and whether it will have any impact on your health or privacy. Also, bear in mind that the laws and standards for relationships between pharmaceutical companies and community members are quite strict in Australia and different to other countries. For example, in Australia it is not permitted for prescription products to be promoted to the public, but this is quite acceptable in the U.S. This means that market research questions in Australia must be careful not to promote a particular product.

HFA regularly reviews market research studies before we promote them on the HFA web site. We have a list of questions to check they are meeting Australian standards and ask to look at their interview or survey questions. Many Australian market researchers belong to professional associations in Australia and follow their codes of practice and also follow the Medicines Australia Code of Conduct, so for some this is just a formality.

Examples of what we ask or check:

• We ask whether they pass the research participant’s personal information on to the pharmaceutical company (not OK in Australia!) or another mailing list (only OK if the participant has given permission – for example, if you agree to take part in further surveys).
• We check whether an “online support group” is actually market research capturing people’s comments and experiences for a pharmaceutical company.
• We also check to see whether the questions are too delving or intrusive and might be distressing or trying to encourage a person to seek a specific product.

SOME POINTERS

If you are interested in taking part in a market research study:

• Check the HFA web site under Bleeding disorders > Participating in research to see whether the study is listed (NB – we only list studies researchers have sent to us)
• HFA doesn’t permit researchers to recruit participants by posting directly on the HFA Facebook page so beware of answering any research requests posted there by researchers who are not from HFA!
• Ask the researchers more about the study and how they will protect your privacy – there are a list of useful questions on the HFA web site
• You might also find it useful to discuss the market research with someone independent of the study, eg a member of your Haemophilia Centre team or your Haemophilia Foundation or your GP.

And if you have any queries about a research study, feel free to contact Suzanne O'Callaghan at HFA – socallaghan@haemophilia.org.au or T: 1800 807 173.