The Bench with bedside initiative™
Empowering with Knowledge, Hope, and Transparency
An unconventional collaborative approach between scientists and patients
The current state of researcher/patient Interaction
To date, researchers rarely interact with the patients or public they are trying so hard to serve and are consequently unable to put a human face to the research they are conducting. For many researchers, it is hard to appreciate or respect that the specimen they are studying has come from a person’s body – a person with a family, a story and often a very big struggle. Patients are unlikely to know the fate of their tissue they may have donated or learn of the results of the research they participated in. The latter is true, in part, because most research results never get published in the first place, usually because the data are negative, which means the expected or desired results were not observed and the null hypothesis was proven.
The patient/researcher relationship is not only poorly developed, but it lacks transparency. There is a missed opportunity as well as a need for researchers to do a better job of disclosure to both academic and lay audiences. It is not hard to argue that there is a bigger role for the patients to play and for them to stay involved with the research study beyond their initial participation.
Transparency is key
Imagine you have donated a cancer specimen or a tube of blood for a research study – Should you have the right to know whether and when your sample was tested and learn about the results of that testing if you choose to know? And, shouldn’t the researcher report all data (negative or positive) without fear of repercussions by his or her peers? That would undoubtedly save time and resources, allowing others to distinguish between a study not ever conducted versus a study that never worked.
Current models for public engagement in science
Although the scientific process is largely unknown to patients and the lay public, these benefactors are often willing to contribute to biomedical research in different ways. Some donate their tissues or biofluids and even their entire body for the betterment of science and the hope of a cure – if not for themselves for others that follow them.
Philanthropy along with patient advocacy are also essential ways for the lay community to contribute towards the fight against human diseases such as cancer. Patients and advocates along with family members can be highly and impressively informed and knowledgeable about ongoing research efforts and the latest research findings. In some cases, patient advocates might speak to the experimental design and serve as grant reviewers to help determine who is most qualified for research funding.
the researcher and the patient travel on parallel roads that rarely intersect
Patient and public engagement in science usually predominates at the beginning of a study or at major milestones and is, therefore, limited to a cursory understanding of the project they may be supporting. Similarly, for mandated patient privacy protections, most researchers receive de-identified patient samples, never knowing who the patient is or what happens to them.
When two parallel roads cross
The benefits of a heightened patient/researcher relationship during all phases of the study outweigh the cons and can lead to increased transparency by researchers and therefore greater researcher accountability and better use of resources. Most prudently, if patients who donated specimens were allowed to follow the results of the research study and learn of the outcomes of the samples they donated, patient and public interest in science will be modernized and enriched, helping to move the field further ahead and helping encourage many others to get involved. A greater sense of involvement will lead to a greater sense of investment in the project and its outcomes, concomitantly improving patient participation, enrollment, obtain critical follow-up data, and funding for the study. Unsure of their fate, patients’ fears of the unknown are bountiful. Increasing engagement with research will empower them to rely on – HOPE.
Two paths converged when breast cancer researcher Bodour Salhia met breast cancer survivor Sharon Schlesinger at the Komen LA County Race for the Cure. Each nurtured a passionate dream to develop collaboration between researcher and patient, and to shed new light on the scientific research process itself. That they met and shared their ideas on a rainy day on the Dodger Stadium grounds, instantly recognizing a kinship, was a miracle in its own way. Out of that chance meeting, Bodour’s ideas for a Bench with Bedside Initiative were born.