This phrase was popularized by the Society for Participatory Medicine (which I am a member) to promote greater patient access to electronic health records, particularly as it relates to meaningful use regulations here in the US. But the phrase is often applied more broadly and has become a common rallying cry among patient advocates.
Fundamentally, the mantra is about a movement to view patients as partners in healthcare.
This movement has yet to meaningfully make its way into clinical trials, though I’ve noticed more discussion on the topic recently. One indication that these discussions are growing more serious is the launch of a brand new conference devoted to the topic of patients as partners in clinical trials.
Patients as Partners Intro & Discount Details
Patients as Partners is taking place on March 3-4, 2014 in Philadelphia and will address how sponsors and patients can partner to improve the patient experience in clinical trials.
The conference organizers are offering a 15% discount to readers of the Rebar Interactive blog and newsletter. To claim the 15% discount, just use the code Reb15 during registration.
Though Patients as Partners is new, you may be familar with the organizers, who are also behind Disruptive Innovation in Clinical Trials (also known as dPharm). I’ve attended dPharm for the last few years and enjoyed the experience immensely, so I expect that Patients as Partners will be great as well.
Below I’ll discuss a few of the sessions I personally find most interesting. But to get a broader sense of what to expect check out the Patient as Partners agenda.
Patient Point of View on the Clinical Trial Experience
Patient advocates also use the “nothing about me without me” motto to promote inclusion of patients at healthcare conferences.
Since the evolution of healthcare is shaped, at least in part, at conferences, patient voices must be heard at these events. I’d argue that this need is particularly strong in clinical trials, where trial decision-makers may not have interacted with patients during the course of their career.
So I was pleased to see that Patients as Partners will include a panel of clinical trial participants to provide feedback. This feedback is intended to help attendees understand the patient clinical trial experience, and ultimately, design more successful trials.
Example topic areas to be covered include:
- Patient Awareness: How did you find out about the trial? How was it presented? Were there any uncertainties or reservations? Why did you agree to participate?
- Patient Enrollment Process: Ease of Process, Consent Forms, Time Commitment. Were all your questions answered at enrollment?
- Clinical Management: Quality of Care, Health Team Involvement
- Quality of Life: Impact on ADL’s, Outcome Measurement Tools. Overall level of satisfaction: would you recommend or refer it?
Sites’ POV on Partnering with Patients (or Lack Thereof)A research site panel, which immediately follows the patient panel, will nicely complement patient feedback.
While patients are best positioned to communicate the individual patient experience, sites offer a unique perspective on overall patient needs and clinical trial execution. The juxtaposition of these two perspectives should give attendees good insight on how trial design decisions interact with human and operational realities.
Developing Protocols with the Patient
I have a mild (for now) obsession with the idea of crowdsourcing protocols.
This obsession stems from two things. First, as a clinical research coordinator, I witnessed many trial challenges that could have been avoided with a more participatory protocol development process. And second, technology offers us an unprecedented opportunity to efficiently incorporate protocol feedback from a multitude of sources.
So I’m most excited by the session focused on developing protocols with patients. Some of the topics to be included in this discussion are:
- How to involve the patient in protocol design
- How do we incorporate patient ideas into the protocol?
- What do we need to do with the protocol design to greatly enhance the patient’s experience?
- The role of crowdsourcing in obtaining the patient’s voice
- How can patient advocacy groups help with protocol design?
- Engaging investigative site staff in protocol design
- Case example of NBCC and BioMarin on partnering together for protocol design
Interested in This Topic? Let’s Connect.
In my opinion, patient partnerships are essential to the future of clinical trials. So the emergence of the Patients as Partners conference is a promising sign, and I look forward to seeing what developments come out of it.
I also enjoy connecting with others who are passionate about partnerships with patients. If that’s you, let’s connect via email, Twitter, or Linkedin.
Jeri Burtchell says
Exciting stuff, Rahlyn! It’s great to see the connections being made and pharma taking the “patients as partners” idea seriously. That’s the goal I’ve been striving for with my website http://www.partnersinresearch.org. Progress in the making! Wish I could be there.
Rahlyn Gossen says
Jeri, thanks for stopping in! We have a long way to go, but I agree it’s good to see some progress. Your voice has been an important part of communicating the patient perspective to pharma. Unfortunately, I won’t make the conference due to a scheduling conflict, but I’ll be following it from afar.