Peggy Porter spoke representing the Consortium Biospecimen Resource (CRS), which is a biobank housed at Fred Hutchinson Cancer Research Center. She said that the organization has good procedures in place to conduct informed consent, collect specimens, and manage the sharing of specimens to researchers, but in her organization and in the industry in general there is no adequate communication strategy to re-contact specimen donors or study participants after the research is complete. She offered no suggestions for fixing the problem, but said that she wanted to hear new ideas.
I think that everyone in the room had been concerned with the problem of return of results for years and that no one knows what the solution is. Most people express the problem as a lack of ability to connect to the audience, and I certainly agree that this is true, but I think the bigger problem ultimately will be a lack of ability to communicate effectively once there is a communication channel established in the future. About the first problem of no communication channel – the reason this is a problem is because researchers typically are several degrees removed from the identities of the specimen donors. Specimens come from various sources including through recruitment in clinical trials, from personal physicians, from specialty physicians, through incidental tests, and from any other situation where a person might give a biological specimen in a place where someone also has time to say, “Can we use part of your specimen for research?” Often the donor has no relationship with the person receiving the donation, and the donation itself is not a memorable incident to the donor. At minimum the donation then changes custody into a biorepository, and from the biorepository to a researcher. There could be more links in the chain, but even in this ideal chain there are four parts – donor, local collector, biobank, and researcher. The local collector is perhaps the only agent who knows the donor’s identity and contact information, and since the local collector is often a small office, they do not have technological infrastructure to take on the logistical burden of receiving information from the biobank and relaying it to a participant. The biobank necessarily will have some identifying information about the patient, which may include some phenotypic data or it may be that they convert the biospecimen into biodata and they only share biodata for research. The researcher will have the least information, or at least no more information than what comes from the biobank. Researchers will generate some result, and the return of results would mean that they send the results to the biobank which is the primary steward and trustholder. The biobank would relay the message to the local collection center, who would get the message to the donor.
The solution to solving the message transfer part of the communication problem is probably an extra secure version of an online social network platform. It would need to be extra secure because since it contains personal health information there has to be greatly reduced risk of it being accessed by a non-authorized user. Mere online password login probably would not satisfy anyone for safety concerns.
But supposing the communication channel was in place. I hear a lot of researchers talking about how they want this channel, but I have a view that they would not know what to do if they had it because they are already making horrible communication decisions in the things which are totally under their control. There are already lots of times when study participants are available and do want information and nothing is available to satisfy them. What I want to see in clinical research is more effort into providing educational materials in layman’s terms, and I feel like this is hardly done. I also feel like if this were done it would be more satisfying in most cases than setting up the complicated communication channel which would be required for personal return of results, and anyway, a layman explanation of the research is prerequisite for a donor to be able to understand their personal results.
I do not fault anyone for the problems because technology advanced so quickly and we are just becoming conscious of the change. The simplest way that I can describe the issue is that a lot of people studied and worked in science for years, and now they are finding that in fact a significant amount of the work in their industry is within the domain of entertainment media production. Research participants demand explanations which are comprehensible and interesting to them and this has more to do with documentary journalism than anything else.