People contributing samples for research may be approached by members of the research team working for a specific study or Biobank. The research team often consists of both scientists and health professionals. People who are ill may be asked to take part by staff who are providing their care, who may collect the samples themselves during routine appointments or who may refer them on to research staff. Sometimes the staff providing care are also those running the research studies for which samples are required. The relationship between staff and participants is an important one because it can influence how people feel about taking part, and whether they will return to participate in further studies. More information on participants’ experiences of staff can be found in ‘Messages to professionals
Most of the people we spoke to felt positive about the relationship they had with staff, often describing them as helpful, professional and informative. Feelings about the relationship depended somewhat on the nature of the project to which people were contributing. In some cases, participation was quite brief and efficient, for example in the UK Biobank where a single appointment is required, but the relationship can still be a positive experience.
Some people also said that they had developed friendly relationships with research staff over time, either because they were taking part in an ongoing study with several appointments, or because they join several projects run by the same team. Healthy volunteers in repeated studies may get to know staff very well and this may be partly why they keep returning to take part.
It is still important to feel confident in the staff and well informed even if the time spent taking part is minimal. As Ian explains, sharing any personal information requires a degree of trust.
Occasionally people felt staff were not as well-informed as they could be and therefore the relationship was not as good.
In some cases, research is carried out by the team providing your care. People described how they valued their relationship with the team.
A few people with serious illnesses said they took part in medical research of various kinds, including biobanking and clinical trials, precisely because they thought it would help build a partnership with staff and get them “on their side”. They saw it as a kind of exchange or bargain, or, as David put it, “You scratch my back, I’ll scratch yours”. (See also ‘Reasons for taking part: personal benefit
Most people said that feeling able to ask questions was essential (See ‘Information and questions
’). For some, it was important that this was done face-to-face (see also Ian’s clip above).
The attentiveness of the staff during the research was also essential in making people feel reassured and comfortable.
It was also important that they made sure participants felt comfortable deciding not to take part or to withdraw.
Some people said that they were thanked by the staff for their participation, and again really appreciated the sense that they were treated as equal partners in the team. However, a few felt that they were given little recognition. Ruth, for example, was not particularly bothered about that, but thought that under more serious circumstances she might have liked more from the staff.