Patients and Patient Organizations
“I didn’t know how sick I was until I wasn’t anymore” -Summer Wadsworth-Delciotto
Patients and the patient community have a unique vested interest in incorporating their needs into study design, outcome measures, project implementation and dissemination of study findings. Patients seek access not only to new HCV therapies, but to high-quality and credible information that can be relied upon for making treatment decisions in conjunction with their health care providers. For this study, a group of HCV patient consultants (HCV-PEG) and several HCV Patient Organizations have been actively engaged from the inception of PRIORITIZE to provide the patients’ perspective and input as members of the scientific team to design the study to answer questions that are important to patients with HCV. These consultants and organizations will remain actively engaged throughout the project to advise on matters related to the trial and as custodians to ensure the overall goals of the project are met.
A patient consultant group, HCV-PEG, was assembled to ensure needs relevant specifically and directly to patients with HCV are fully considered in the conduct of PRIORITIZE. The group was formed to advise the study in the pre-proposal period through project closeout on the research and protocol design, measures used, informed consent documents, survey instruments and survey delivery methods. The composition of the group is diverse: socially, racial, age and individual exposure to HCV therapy. The HCV-PEG will continue to meet regularly throughout the project to monitor the conduct of the research and are represented on the study Steering Committee by 2 members and one is appointed to the Executive Committee.
Several of the Patient Organizations interact with their communities through newsletters and websites. These groups have agreed to use these media to participate in informing their communities of the study and purpose and to help recruit patients. These media will also be used to disseminate the study findings. A representative of the Patient Organizations, Lorren Sandt, advises the project as a member of the PRIORITIZE Steering Committee.
|Patient Organizations||Contact||Site URL|
|Caring Ambassadors Program, Inc.||Lorren Sandt||http://caringambassadors.org/|
|Harm Reduction Coalition||Daniel Raymond||http://harmreduction.org/|
|HCV Advocate||Alan Franciscus||http://hcvadvocate.org/|
|Hepatitis C Association||Dennis Simon / Sue Simon||http://www.hepcassoc.org/|
|Hepatitis Education Project||Michael Ninburg||http://www.hepeducation.org/|
|National AIDS Treatment Advocacy Project (NATAP)||Jules Levin||http://www.natap.org/|
|National Viral Hepatitis Roundtable||Ryan Clary/ Tina Broder||http://nvhr.org/|
|Project Inform||Andrew Reynolds||http://www.projectinform.org/|