Biobanking

Messages to professionals

We invited people to give a message to the professionals involved in biobanking and research. They used this opportunity to make recommendations about how their experiences could have been improved, and to highlight aspects that were positive and negative. These especially concerned their relationships with staff, the information they were given and getting feedback after the research. (See also ‘Communication and relationship with staff’, ‘Information and questions’ and ‘Getting feedback’).
 
Generally people wanted to thank the staff and to praise them and their work. They also wanted to encourage them to keep doing the research they were doing and were impressed with those who researched “frustrating” conditions such as Motor Neurone Disease.
It was appreciated when staff made the effort to establish friendly relationships or partnerships with participants, especially when they were taking part frequently or in studies which required several visits. Most people said they experienced positive interactions with staff with one saying she felt like a “valued colleague”. Research nurses and midwives often build particularly close rapport with people.
For the most part, people’s experiences of biobanking were positive. However, one person, David, thought the doctors could have been friendlier. He explains how their attitude could stop people from asking important questions about participating in biobanking.
Gill pointed out how important it is for staff taking people’s consent to be able to explain what the project is about.
People made some recommendations that they felt could help improve their experience, including the importance of providing feedback about study results if possible. This was both as a matter of courtesy and as a way of encouraging people to take part another time, though it was recognised that this might not always be practical (see ‘Getting Feedback’). 
A further recommendation concerned the information they had received to help them decide whether or not to take part. In addition to receiving clear written information, people felt it was also important to have someone to discuss the research with and to learn about studies in which their samples have been used. 
There were differing views about who should help possible volunteers decide whether to take part. Some people felt they wanted to make their own independent decision, while some wanted to discuss it with someone else, perhaps their GP or a family member. However, Karen felt sometimes doctors are too reluctant to give people advice.
David had similar feelings about one occasion when he made a decision not to take part in a study and the doctor replied that she would have said exactly the same if it were her. David thought, “Well, why are you asking people to join this trial if you don’t believe in it?”
 
In general, the people we spoke to were glad they had taken part, and many wanted to thank the researchers for providing them with the experience. Julie said, “Thank you for letting me take part. Thank you for treating me as a valued colleague in the process and good luck with future studies”.

Last reviewed February 2016.

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