E-Newsletter - December 2015

alliance patient advocate committee update

The 2015 Alliance Fall Group Meeting was a very full meeting for the Alliance Advocates. The Patient Advocate Committee welcomed Susan Krivacic as the newest member of the committee. Ms. Krivacic is a long-time cancer research advocate. She is a lymphoma cancer survivor and will serve as a patient advocate for the Alliance Health Outcomes Committee.  She will also attend Alliance Lymphoma Committee meetings.

The PAC also welcomed several guests - first being Alliance Group Chair Dr. Monica Bertagnolli.  She discussed the reorganization that has taken place at the executive level of the Alliance, namely the appointment of new Group Vice-Chair Dr. Suzanne George, of Dana-Farber Cancer Institute, and the restructuring on that position, which will now focus on the work of the Alliance Foundation. Dr. Bertagnolli also announced that she will personally take on the job of mentoring the Patient Advocate Committee, which will now report to her whereas in the past the committee reported to the Vice-Chair.

Next, guest speakers Drs. George Chang and Patrice Greenberg discussed the progress of the several Patient-Centered Outcomes Research Institute (PCORI) funded Alliance projects. Both speakers have openly sought the input of the Alliance Advocates on all of the PCORI projects beginning with very early discussions of the various concepts. The PAC is pleased to report that all of the concepts that the Alliance Advocates have been involved in have received funding from PCORI and are advancing. Funding has been approved for breast, GI and prostate concepts and work is underway on a lung cancer concept.

The involvement of the PCORI teams with the PAC has been productive for everyone involved. The PCORI team has asked for additional time with the PAC at future Group meetings.

The final guest presenter was Connie Szczepanek, Director of the Cancer Research Consortium of West Michigan, an NCI NCORP site. Ms. Szczepanek discussed work being conducted that started with an American Society of Clinical Oncology (ASCO) committee to address the issue of patient coverage analysis of clinical trials. She covered some very interesting work that will have a very positive impact on the patient experience in clinical trials. Financial burden associated with clinical trial participation is a major issue for patients. Ms. Szczepanek also discussed work her committee is doing to front load coverage analysis earlier into the process and take advantage of cooperative group resources in addressing this important issue. This work will substantially improve the process of enrolling patients at all levels of participation, particularly the NCORP level. It also has the potential to take significant monetary waste out of the trial administration process and allocate these dollars into more productive research efforts and reduce administrative waste.  This should also improve accrual rates for many trials and allow them to open earlier and with less patient burden. Work of this committee should lead to broader Alliance cancer care delivery research. She asked for Alliance Advocate assistance in advancing research in this area.

Patient advocate Jack Whelan discussed work being done at ASCO on the Cancer LinQ project on behalf of patient advocate Jim Omel. More information will be made available in the near future on the very important Cancer LinQ services that will be made available to clinicians and patients.

PAC Vice-Chair Patty Spears provided the final presentation and spoke about her research on the collection of Patient Reported Outcome (PRO) information. The early work that she has done is showing very interesting and valuable information about the best way to collect PRO data. Several key factors have been identified in Ms. Spears’ early work. Some of the key elements of this early research are showing that there is no negative impact on patient participation intent for clinical trials when PRO information is included in a trial. Her research is also showing some very strong patient recommendations collection of PRO data in terms of the number of elements being collected, time of PRO data collection and overall questionnaire length. PAC Chair Pat Gavin also made the presentation to the Alliance Cancer Care Delivery Research Committee. Strong recommendations were received from members of the committee, along with others attending the Alliance Committee Chairs Meeting, for this work to be published now and other follow-up research should be conducted to expand Ms. Spears’ early research.


For other articles in the December issue of the Alliance E-News newsletter, see below.