Peek behind the paper: Regenerative medicine misinformation and patient education

In this interview, corresponding author Zubin Master discusses his recent Regenerative Medicine research article, “Challenging misinformation and engaging patients: characterizing a regenerative medicine consult service”.

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Can you introduce yourself and tell us a little about your role?

My name is Zubin Master and I am an Associate Professor of Biomedical Ethics within the Biomedical Ethics Research Program and the Center for Regenerative Medicine at Mayo Clinic (MN, USA). My research focuses on ethical and policy issues related to stem cells and regenerative medicine, amongst other areas. I am specifically interested in how patients make decisions about experimental regenerative interventions. This would include assessing their beliefs, information sources and who they interact with that impacts their decisions. 

What led to the creation of the Regenerative Medicine Consult Service?

The Regenerative Medicine Consult Service was developed in 2011 due to a rise in the number of patient and public queries in response to a stem cell clinical study being announced at Mayo Clinic. Dr Timothy Nelson, a coauthor on the paper, and others developed a consult service to provide information about stem cell and regenerative interventions for patients. In 2016, a Regenerative Medicine Consult Service specializing mainly in orthopedic interventions was created in Florida. 

Can you talk us through how the Regenerative Medicine Consult Service operates?

The consult service has a toll-free number that anyone can call for information regarding stem cells and regenerative medicine. The caller is asked about the reason for their call (typically a specific diagnosis). If it is orthopedic in nature, or related to cancer, the patient appointment scheduling specialists triage the calls to the applicable department at Mayo. If anything else, the appointment scheduler will schedule an education phone call onto the consultant’s calendar. The consultant will call the patient and answer questions, provide information, and look for potential treatments and/or open clinical trials at Mayo Clinic. Educational resources may be sent to patients and referrals to the clinical practice or a connection with a study coordinator about a specific trial may also take place. 

How did you find the initial public perception and level of information around regenerative medicine? 

There are several reputable sources of information about regenerative medicine available to the public, but they mostly concentrate on the science behind regenerative medicine. No study has really shown how the public perceives online information about regenerative medicine. For example, do they find it useful, do they understand it and does it help them decide on whether to get a regenerative intervention?  

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While it is important to know about the science of regenerative medicine, my personal view is that patients are likely more interested in whether there is something out there that can help them. Public information about regenerative therapies, however, is replete with inaccuracies, errors and exaggerations. As such, providing a real-time, updated source of information where patients can have a dialogue with an expert about regenerative options fills this informational void and also corrects misinformation about the safety and efficacy of regenerative therapies. 

What were the major sources of misinformation for patients?  

We did not assess sources of misinformation in this study. However, from our patient interviews, we did find that several patients were surprised there are no stem cell therapies available for their condition. This speaks to the hype and likely the misinformation patients confront about stem cells. Many other studies, including ones from our group, have found that the major source of misinformation is from clinic websites and advertisements online. Other online sources of misinformation can be found in patient blogs and on social media. 

What surprised you about your results?

Our main result is that we identified a unique group of information seekers who are older to elderly, have a range of chronic clinical conditions and live throughout the USA. While we did not assess whether a consultation can influence health behavior, we were somewhat surprised to find that patients did report changing their mind about undertaking an unproven regenerative intervention after speaking with a consultant. 

How beneficial do you think the consultation service has been and how beneficial did the patients think it had been?

I believe a consultation service is important because patients want to know about regenerative options and there are few reliable sources of information on this topic. Our data shows that most patients did find the consultation useful. Most importantly, a consultation service provides a way not only for patients to receive trusted information, but it permits a consultant to speak with them about their condition and to help navigate the patient better. Having the opportunity to speak with an expert and having them listen and discuss their condition in an empathic manner is also a benefit to patients. 

What is the key point you hope the field can take from your study?

Patients who have exhausted many or all conventional options are keen to identify information about stem cells and regenerative medicine. Part of the responsible translation of regenerative medicine requires the scientific community to fulfill the unmet informational needs of patients and provide reputable, evidence-based, and up-to-date information to patients about stem cell and regenerative interventions related to their condition. 

Read Challenging misinformation and engaging patients: characterizing a regenerative medicine consult service ahead of print now>>

The opinions expressed in this interview are those of the interviewee and do not necessarily reflect the views of RegMedNet or Future Science Group. 

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