Better treatment starts with input from patients
CreakyJoints was created to give the community of arthritis patients and their families a voice. Part of that includes getting a wider circle of patients involved in the research that can bring about changes into how arthritis is treated. Patients and others can have a stronger voice by taking part in research such as Bringing STakeholders Together for Engagement in Research for the Selection of Arthroplasty Implant Devices, a project we’ve nicknamed “BeTTER SAID.”
Patient-engaged research can help fix problems like the safety of implantable devices. Over the past year, we met with patients, advocates, researchers, clinicians, and health systems leaders in Boston, Chicago and New York City to talk about device selection as a major factor in joint replacement safety. We believe that the choice of which device to use is an important health care decision that can be guided with better evidence.
CreakyJoints realizes that some individuals undergoing joint replacement may feel comfortable allowing their physician to make all the decisions. We also realize that most implants are successful. However, other implants are not successful or patients may want to take a more active role in joint replacement decisions. At a CreakyJoints meeting last spring in New York City, one man who had undergone three hip replacement surgeries—including one for a device that had failed—said, “I think the average patient is really poorly informed and doesn’t know the different procedures and devices…As someone who actively manages his [chronic] disease, I think as much information and research should be done [as possible].”
CreakyJoints wants to bridge the gap in patient knowledge about this issue by recruiting a group of patient research partners.
What can you do?
The device selection process was identified by CreakyJoints and our partners as an area that is under-studied. Patients are interested in the selection of devices, but they must be further involved before research is conducted.
To that end, you are encouraged to sign up for a one-hour webinar (conference call) to be held in February that covers the following topics:
- Patient Experience—Discussion of patient experience and knowledge regarding joint replacement implant devices (artificial knees and hips)
- Research Involvement—Discussion of how patients can be involved in all phases of research
If you are age 18 or older, live in the U.S. and have had or are thinking about having knee or hip joint replacement surgery, you may be interested in our upcoming webinar discussions scheduled for February 2016. We will share the exact date and time of the webinar soon.
You can participate at home by phone, computer or both. Participating in this patient-led project can lead to changes in the way care is delivered. For example, through your involvement, you may contribute to improvements in the safety of joint replacement and implant devices. Or you may help initiate improvements in the way your individual care is delivered, like making joint replacement follow-up at home possible.
This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (2228-GHLF).
Looking for more ways to get involved in research? Check out www.ArthritisPower.org.
Dr. Thomas Concannon is Senior Policy Researcher at the RAND Corporation, Assistant Professor of Medicine at Tufts University School of Medicine and Associate Director of Comparative Effectiveness Research (CER) Programs at the Tufts Clinical and Translational Science Institute. His research is focused on patient care in emergency, acute and post-acute settings using administrative claims, survey, and other types of data. Dr. Concannon has been active for over 20 years in efforts to engage patients, consumers, communities, and other stakeholders in healthcare research.