Tissue Issues: Moving Towards Patient-Centered Tissue Donation for Cancer Research

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Patty Spears

There are many issues with tissue; that is, tissue donated by patients for cancer research.  Patients are often asked to donate tissue when joining a research study.  Research on patient tissue is an important step to bring new discoveries from the laboratory to the clinic, which will improve the lives of cancer patients. Patient tissue refers to samples, which include materials and fluid from your body like tumor or normal tissue, blood, skin, hair, saliva, urine and stool samples (Figure 1). 

Research involving tissue is important, complicated, and always changing.  A few of the changes affecting tissue use in research are listed below.

• An increasing need for fresh tissue. Some new and useful laboratory tests call for freshly collected tissue.  This can disrupt the ‘normal’ process of tissue donation and requires extra coordination between the clinic, pathology and research. For example, usually tissue is collected, sent to the clinical lab and then preserved and stored.  When fresh tissue is needed, the tissue has to get to a researcher within a very short period of time and not put in any material to preserve it.  This takes coordination of the surgeon, pathologist, clinical staff and researcher.
• Targeted drugs are based on tumor biology.  Most new drugs are ‘targeted’, which means they work based on the presence or absence of a specific biological marker.  Tissue is needed to discover the biological marker and then to identify patient tumors that have the marker.  For example, patients with breast cancer tumors that have a biological marker on their tumor called HER2 (human epidermal growth factor receptor 2) can be treated with a new drug called Herceptin®.    
• Treatment for cancer that has spread to other parts of the body (metastatic cancer).  It is important to examine metastatic tumors to be able to provide the right treatment.  Researchers have found that cancer can change as it spreads to other parts of the body.  The cancer may have new markers that may point to a different drug that could be more effective.  For example, an original breast cancer tumor may not have a biological marker called HER2, however, the metastatic tumor in the liver may have the HER2 biological marker and the patient can be treated with Herceptin®.
• Understanding resistance to drugs.  When treating patients with metastatic disease, drugs work for a while. However tumors develop ways to escape the effects of the drug and begin to grow.  Finding changes in a tumor that may lead to the tumor growing (developing resistance) requires collection of multiple tumor samples over time.

Collecting patient tissue for research is important.  The good news is that most patients will donate tissue if asked (Baer, 2011; Bryant, 2015).  Patients are willing to donate for their own health, the health of their family, or as a sense of duty to other patients.   However, there are some challenges to collecting tissue including increasing demand, the need for fresh tissue and the collection of multiple samples over time.

One way to increase access to tissue for research is to consider a patient-centered approach to tissue donation (Figure 2).  A patient-centered tissue donation program could make sure researchers have access to tissues they need to do meaningful research.  It will also make sure patients will be valued partners in the cancer research process.  A patient-centered approach to tissue donation includes the involvement of patient advocates.  Patient advocates can be involved in every step of the process from the idea (conception) of a research study through reporting results (conclusion).  Patient advocates working with researchers and surgeons can make sure the information provided to patients is understandable, so they can make an informed decision.  This includes the consent form as well as additional educational materials. Patient advocates can also help identify and minimize potential barriers to patient tissue donation.   A patient-centered tissue donation program can improve the understanding of tissue donation which can increase a patient’s willingness to donate tissue and acceptance of multiple collections over time. 

Another part of a patient-centered donation program is to appreciate and partner with patients who donate their tissue for research.  Treating patients as partners will improve their experience of being in a research study.  One way to do this is simply to thank patients for their tissue donation.  Showing appreciation to patients who donate tissue can make patients feel good about their decision to donate.  Another is to give patients information after the study is completed.  This can be done by communicating research results directly to the patient and to the public.

A patient-centered tissue collection process will make sure the largest number of tissues are collected.  It will also make sure patents are valued as partners.  There are examples of patient involvement to increase collection of multiple tissue samples over time (Batten, 2018) and the development of the Independent Cancer Patients Voice (ICPV) program ensuring patient involvement in all aspects of tissue collection (Wilcox, 2015).  Every institution should consider building a patient-centered tissue donation program. 

Edited by Chris Wang

Header image: https://pixabay.com/photos/tissues-box-of-tissues-hygiene-1000849/

Articles of interest

Baer AR, Smith ML, Bendell JC. Donating tissue for research: patient and provider perspectives. J Oncol Pract. 2011 Sep;7(5):334-7. doi: 10.1200/JOP.2011.000399. PMID: 22211133; PMCID: PMC3170069.

Batten LM, Bhattacharya IS, Moretti L, Haviland JS, Emson MA, Miller SE, Jefford M, MacKenzie M, Wilcox M, Hyslop M, Todd R, Snowdon CF, Bliss JM. Patient advocate involvement in the design and conduct of breast cancer clinical trials requiring the collection of multiple biopsies. Res Involv Engagem. 2018 Jul 16;4:22. doi: 10.1186/s40900-018-0108-0. PMID: 30026963; PMCID: PMC6047125.

Bryant J, Sanson-Fisher R, Fradgley E, Regan T, Hobden B, Ackland SP. Oncology patients overwhelmingly support tissue banking. BMC Cancer. 2015 May 17;15:413. doi: 10.1186/s12885-015-1416-5. PMID: 25981796; PMCID: PMC4438453.

Wilcox M, Grayson M, MacKenzie M, Stobart H, Bulbeck H, Flavel R. The Importance of Quality Patient Advocacy to Biobanks: A Lay Perspective from Independent Cancer Patients Voice (ICPV), Based in the United Kingdom. Adv Exp Med Biol. 2015;864:171-83. doi: 10.1007/978-3-319-20579-3_14. PMID: 26420622.