One of the things that has always surprised me about stem cell research, or any scientific research, is that so often the people with most at stake never meet. Researchers spend most of their time in the lab trying to develop new treatments so they don’t often get to meet the people who are depending on them to save or improve their lives, the patients.
To try and change that dynamic two Canadian medical groups recently brought together a mixture of researchers, health care professionals, patients and patient advocates to find ways to improve communications between these groups. The hope was that with better communication and better information they would collectively be able to make better decisions about how to manage patient health.
Lisa Willemse, a writer who has worked with CIRM on some of our projects in the past, wrote a wonderful piece about the meeting for the online magazine Medium. In it she explores some of the areas that create communication barriers between these groups and how those barriers can be overcome.
The problems caused by these barriers are not trivial. They can result in patients not knowing about potentially life-saving clinical trials in the US, or turning to unproven, experimental therapies offered at overseas clinics. (Here’s a document that addresses some of those issues)
Lisa quotes one patient as saying:
“I didn’t know what I didn’t know! I had filled out an application online was accepted to a stem cell clinic in Panama. The cost per treatment was $21,000 and I didn’t know what questions to ask!”
Happily the meeting came up with some thoughtful, really positive suggestions on ways to overcome these barriers. These include:
- Ensuring specialists and other health care practitioners are kept up-to-date with clinical trial information, since these are where they turn first for advice.
- Providing more support for patients from health care providers. They should not be expected to have all the answers but should at least be able to advise on informed consent and provide credible resources.
- Developing improved ways to search for relevant clinical trials.
- Creating basic explainers on clinical trials for patients to help them determine eligibility and understand protocol.
There were also suggestions on how researchers can do a better job of communicating with non-scientists, such as using jargon-free language to answer questions and providing a list of questions people should ask when considering any stem cell therapy. Here’s an infographic we put together on that topic.
This meeting is a great example of the power and importance of bringing together these different groups, all of whom have shared interests and goals. It starts with a conversation that begins to break down barriers. Hopefully it gives doctors ideas on how they can better equip patients to make informed decisions about clinical trials; by meeting patients it helps researchers put a human face on the work they are doing; and hopefully it gives patients a sense that their voices are being heard, and their needs addressed.
This was one relatively small meeting in Canada but the lessons learned apply to every state, and every country and could point the way to creating a more responsive health care system that better meets the needs of all those involved.