Treating donors as partners in Biobank research
Mar 18

Treating donors as partners in Biobank research

When people donate their tissue, they are making an important contribution to research. Research that’s developing treatments for patients for future generations. One estimate gives the percentage of donated samples actually being used for research at only 15%1.

Far too many are stored and never used. Instead, they are destroyed as ethics, consent or funding eventually runs out.

This situation goes against the donors’ wishes and misses the opportunity for progressing biomedical research and discoveries. Although there is often a willingness to participate, many donors still have concerns about how their donated tissue samples will be used. So, if they knew many samples were not actually being used would these selfless people continue to donate?

The driving priorities for a Biobank should be to maximise the number of samples going out to researchers. At the same time you’re looking to maximise the number of good quality biological samples coming in from donors. We have covered the first of these in blogs such as Achiever Medical’s automatic links to UKCRC but today we’re looking at the latter.

It’s about building trust and also involving your Biobank participants who have a genuine interest in how they’re helping – and where they could help further.

Your Biobank shouldn’t have a closed door to donors

Clinical Patient and Consent

You don’t want your donors to simply go through the consent process to release tissues to you and then forget about you. They won’t then become repeat donors or advocates for your Biobank and that really is what you should be aiming for. To maximise their impact on your Biobank you want to make them feel part of your team. So, how do you treat donors as partners in Biobank research.

Here are a few pointers on how to do just that.

Initial information sheets

Although many donors donate samples as part of clinical trials, patients often donate tissue in the course of diagnosis or treatment. Carefully consider this setting and highlight how previous donors’ generosity may have contributed to the diagnostics or treatments they are themselves receiving.

So, make your work personal to them to develop buy-in right from the start. You also want to generate some excitement about the research you’re supporting. Therefore, you should include the research goals and any progress already made in that initial information sheet. You want to really engage them.

Periodic newsletters

Once your donors know about you and have donated tissues you want to keep their interest. You want to periodically let them know that you are working hard on their behalf. They also want to know that you’re being successful – everybody likes to be part of a success story!

So, let them know of the recent research projects you have supported with your human biological samples. Also, tell them about recent wins and breakthroughs, even if they’re not yours directly.

All this shows that you’re making progress off the back of generous donors like them. Make it personal and show them the difference they’re making.

All this doesn’t have to be an expensive overhead to your Biobank’s daily workload – goodness knows, you’re busy enough already! However, if you get their email addresses at the start (and permission to contact them periodically – don’t forget GDPR compliance!) then this should be straightforward.

Those good news stories also make very useful material when you’re bidding for on-going funding!

Communicating through a secure, online donor portal

If you are using a LIMS that has a portal option, then this could be used to give your donors their own secure online view into your Biobank holdings. They can see (anonymously) what samples are available for researchers. Plus, you may want them to see personalized information, such as allowing them to track their own samples and where you’re using them! Dashboards can summarise information pertinent to them.

The point is that if you already have a researcher portal publishing anonymised sample holdings then, with suitable security filters, you can use this to make your Biobank donors feel part of the team. And at very little extra cost. They can feel like they’re actually wearing a lab coat and having a tour of your Biobank. And they don’t even need a personal guide.

Having your mission statement, newsletters and information sheets available for download in PDF format gives them the materials to go out and recruit their friends. You’ve turned them into advocates for your Biobank. That’s great for donor retention, advertising and reputation. And, yet again, what a great story for those funders!

Involve donor representatives

HTA Compliant Software

You can ask donor representatives to attend meetings periodically. This might include them having a seat on the steering committee or attending ethics oversight meetings. You only need to involve one or two donors but they can then make contributions to your newsletter or organise feedback to their peers without your help. The point is that your donors should feel they are represented and therefore valued.

In summary

Donors in Biobank research shouldn’t be just passive patients who simply sign yet another form before diagnosis or treatment.  You want to turn them into ambassadors for your Biobank and advocates for recruitment. This means treating donors as partners in Biobank research. You want to make them enthusiastic to donate further or to extend their consent and then to go out and recruit yet more donors to help you to support research.

Remember, that’s why Biobanks exist in the first place.

Discover more

References

  • Use MY data
  1. Discussions at ‘Your data, your control’ workshop, May 2018, run by use MY data

About The Author

Gary Rooksby has over 25 years’ experience implementing and evolving corporate systems including manufacturing and quality systems for a range of major clients such as the MOD. For the last 18 years Gary has specialised in Sample Management Software with emphasis on process optimisation and data management. Gary works in partnership with clients and draws on his wealth of experience to help institutes and their teams to maximise the benefits from new and upgraded systems. Business needs are constantly evolving, and Gary loves the changing challenges. Gary always focuses on delivering value to the users, whether that is financial, scientific or simply easing workloads. He believes that the system is never an end in itself; it is a tool to help the users achieve their goals and that principle is always at the heart of any system or data designs.