- Describe your topic.
- Patient navigators are increasingly used to help patients make better informed decisions that better match their personal preferences and needs. As important as these efforts have been there is a dearth of evidence that suggests what works, what does not work, and the cost effectiveness of these efforts. Patients and clinicians would substantially benefit from well prepared evidence. Prostate cancer patients experience with navigators would be a good initial focus because of the large uncertainties in this preference based condition. Terry Kungel, Chairman & C.E.O., Maine Coalition to Fight Prostate Cancer.
- Describe why this topic is important.
- Preference based medical conditions, such as prostate cancer, where there is no clear "best treatment" create enormous anxiety, uncertainty and confusion. A substantial percent of men are making premature decisions with inadequate information because they are so anxious about making the problem go away. Prostate cancer patients are making fear based desions with little or no homework. Very few are making informed decisions with a full understanding of the options and the likely consequences of each choice. Patient navigators are helping these patients but there is too little information on the effectiveness of this approach.
- Tell us why you are suggesting this topic.
- Ten years of experience and frustration watching men and their loved ones make decisions that are wrong and which frequently lead to their premature death. If we can find the patient navigator programs that are the most effective it could have a huge impact.
- Target Date.
- 2020-12-30
- Describe what you are doing currently and what you are hoping will change because of a new evidence report.
- The Maine Coalition to Fight Prostate Cancer is counseling men in non-medical areas and working with patient navigators at two hospitals. We have seen dramatic improvements in men's decision making when they are paired with knowledgeable people who can help them navigate the medical and emotional journeys of prostate cancer.
- How will you or your group use the information from a new evidence report?
- We would like to encourage and assist every hospital in Maine to setup a patient navigator to assist men with any form of cancer. Without a new evidence report we will continue to hear the response that it sounds too expensive and the outcomes are too doubtful.
- How would you or your group plan to disseminate information from the report? Who would you plan to disseminate it to?
- We would like to meet with the President and Chief Medical Officer of every hospital in Maine. We would also work with extensive cancer patient communities in Maine to provide both a "pull" and "push" marketing effort.
- Do you know of organizations that could use an evidence report to change clinical practice? Are you a part of, or have you been in contact with, any organizations that might implement the research findings of an evidence report?
- As Chairman and Chief Executive Officer, Maine Coalition to Fight Prostate Cancer, assist six prostate cancer network groups serving 200+ active prostate cancer patients and their loved ones and over 10,000 prostate cancer survivors in Maine. Lead efforts at awareness, outreach, education, publicity, fundraising and patient assistance throughout Maine. Represent Maine as a Consumer Reviewer, Congressionally Directed Medical Research Program, which helps identify research grants that merit funding by the Prostate Cancer Research Program, Department of Defense. Serve as a patient PCORI Merit Reviewer and PCORI Ambassador for the Patient Centered Outcomes Research Institute. Serve as a Patient Representative, Advisory Committee Member, Special Government Employee, Food and Drug Administration, Center for Drug Evaluation and Research. Served as the Chair, Steering Committee, Consumers United for Evidence “CUE” based Healthcare. Served on MaineHealth’s Shared Decision Making Advisory Group. Selected for the Health Leadership Development Group by the Board of Directors, Daniel Hanley Center for Health Leadership. Served on Dana-Farber’s Visiting Committee for the Lank Center for Genitourinary Oncology. Served on multiple state advisory panels. Served as the lone patient representative on two ASCO guideline commitees reviewing prostate cancer procedures, both were published.
- Information About You: (optional)
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- Provide a description of your role or perspective.
- Third generation prostate cancer patient.
- If you are you making a suggestion on behalf of an organization, please state the name of the organization.
- Maine Coalition to Fight Prostate Cancer, see www.MCFPC.org
- Please tell us how you heard about the Effective Health Care Program.
- Today's email about this program.
