Stanford University: Partnering with the Public and Patients in Medical Research (free online course)

[Andy]

About This Course
There are many benefits to partnering with patients in medical research. Yet despite much to be gained, patients and researchers often fail to meaningfully partner to advance medical science. How might we create trusting relationships between patients and researchers? What models might exist to enable inclusivity and respect of all relevant stakeholders in the medical research enterprise? These are just some of the topics we will cover in this Stanford Online course.

Patients can move past the challenges of misunderstood roles and mismatched priorities to make practical contributions.

Patient research partnerships are reported as delivering value through every stage of the research process while increasing health self-management and research literacy. Learn how Everyone Included™ partnership in the medical research enterprise can improve the work of researchers and the lives of patients.

https://lagunita.stanford.edu/courses/course-v1:Medicine+MedxPPStrategy+Winter2019/about

 

[Andy]

I'm working through this at the moment, and thought this might be of interest to people here, it includes Fiona Godlee declaring how important it is to include the patients point of view in research.....

 

[Andy]

Transcript of Fiona Godlee's bit

Medicine has changed a great deal over the years, and we have to reflect that change, but it seems to us also that we can prompt, or even perhaps even lead some of the change. And the big change around the relationship between doctors and patients is the power dynamic, the knowledge differential, and the ridiculous sense that patients so often, we begin to see how much they’re excluded from the decision making by those power differentials. And what we wanted to do is to make sure that the BMJ not only reflected the gradual change from sort of patriarchal, paternalistic medicine to much more a shared decision making type of medicine.

So we thought about ways in which not only could we talk the talk, and tell people about what they should be doing, but also walk the walk. And in some ways, we’re a very traditional medical journal, we publish research and education, and we publish other things as well, journalism and commentary. So we looked at all of those different elements of what we do, and tried to think where could patients take a more involved and increasingly perhaps even a central role. And part of the thinking was to say this content is not for patients, this content is
for clinicians. So we’re not talking about speaking directly to patients, but we’re trying to make sure that the content that clinicians read and listen to actually will help them be better doctors and nurses and other clinicians, because they will understand the patient perspective.

So, it’s been a very interesting experience. We’ve had some fantastic input from editors and from patient advisors. We’ve got a patient partnership strategy that Tessa Richards has run. We’ve got now patient editors on staff, we’ve got patient advisors on all of our different sections, and we are learning a great deal, we’re learning a vast amount from them.

 

[Andy]

So, I've just discovered that I've wasted my time on this course. I started with good intentions and completed the minimal requirements that were required on week one. Fell behind with things due to a crash and discovered that each course 'week' has a strict deadline to complete everything by, as I missed the deadline, I can't progress the course, and checking their FAQ they don't offer extensions. Quite ironic for a course that is about partnering patients, apparently they only want patients whose illness doesn't hamper them in working on the course.

 

[Trish]

I've had a similar experience with some other free online courses run by Universities all over the world through the Coursera and EdX platforms.

If you didn't do the assignments on time, they were no longer available on some courses, on others you could work at your own speed. The problem with some of them is that they have a system of students marking each others work which means everyone has to stick to the same timetable.

Ones with multiple choice tests tended to be more flexible, though if you wanted to get the end of course certificate you had to do it on time.

It would probably be worth giving them some feedback on your experience.