Patient Voices Network Blog

Developing CERTAIN Projects Seeking Patient Partners

The CERTAIN Patient Advisory Network is building a community of individuals who want to inform or partner in the broad range of healthcare research underway and being developed in CERTAIN. We currently have two opportunities that we are exploring and need Patient Partners who are interested in helping us develop patient-centered research studies. If you are interested in getting involved with either of the projects described below, please contact Sarah Lawrence at sarah@becertain.org or (206) 221-7453 to learn more.

  1. The “Every Voice Counts” Study: Previous research and experience tells us that certain groups of people are more likely than others to respond to surveys about their health and quality of life after healthcare interventions like surgery. The voices we do not hear leave a large gap in our knowledge about how well healthcare treatments work and what we can do to provide better healthcare. Researchers suspect that those who don’t respond to such surveys have more complicated problems, don’t have trust in the system, or have less time and fewer resources, but little is actually known about these people. CERTAIN wants to better understand why people don’t participate in these surveys and how we can make sure their voice is heard. Patient Partners on this project would help us determine if patients find this question to be an important one worth pursuing, identify suspected reasons for not responding, and help us create a research study to fix this problem.
     
  2. The “If I Only Knew….” Study: CERTAIN recently developed a Spine Outcome Prediction Tool  that takes into account people’s habits and conditions, such as smoking status, the intensity of pain before surgery, and whether or not someone has had surgery before, to predict how likely it is that spine fusion surgery will improve pain and function. We hope the prediction tool will be an effective tool to inform the decisions patients and their doctors make about spine surgery. CERTAIN wants to understand how tools like this affect the decisions patients make and the outcomes they experience. Does the Spine Outcome Prediction Tool  help make sure that the right people get the right surgery at the right time? Patient Partners on this project would help us determine if patients find this question to be an important one worth pursuing, identify the best way to design our study to ensure that patients are interested in participating, and assist in developing plans to communicate study results to patients.

If you are interested in partnering with us to develop either of these projects, please contact Sarah Lawrence at sarah@becertain.org or (206) 221-7453. Please note that research study development work is typically unpaid work, for all members of a research team, so we are currently unable to compensate you for your work in project development with us. We consider our Patient Partners an integral part of our research team and include funds for their compensation during the project period in any funding proposal submitted.


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