Guest Expert: Margo Michaels: A conversation between a patient and a doctor…
Originally posted by: Ellen Richmond, AccrualNet Co-Moderator on the former AccrualNet site on Feb 08, 2011.
Our guest expert for February is Margo Michaels, a former education branch chief at the National Cancer Institute and founder of the Education Network to Advance Cancer Clinical Trials (ENACCT). Margo is a passionate advocate for cancer clinical trials who believes that every person diagnosed with cancer must have access to all treatment options. ENACCT is working to systematically generate the evidence and practical steps needed to ensure that cancer clinical trials are an integral part of every treatment discussion. Welcome, Margo!
A recent AccrualNet post stated that the discussions around clinical trials are “less than ideal and that the option of a clinical trial is frequently not mentioned… It all comes down to a conversation between a patient and a doctor.” What a simple and elegant statement! Yet there has been little attention paid to the internal systems required to increase the number and effectiveness of those conversations in both cancer centers and community oncology practices. Before a patient walks in the door, what are the policies and procedures that can create more opportunities for effective discussions? Over the last five years, our organization has trained hundreds of oncology professionals on enhancing their recruitment and retention practices, and has found that many of the common barriers encountered relate to ineffective “systems” within community oncology practices (see below).
Identified Challenges for Recruitment and Retention Within Community Based Oncology Practices
1. No systematic approach to select trials that best match patients seen.
2. No systematic way to screen/pre-screen eligible patients for CCTs.
3. Difficulty accessing patients from minority communities/medically underserved communities.
4. Ineffective patient “hand-off” from the oncologist to the nurse or research staff.
5. Nonexistent relationships with other community providers to enhance referral.
6. No systematic approach on how to best communicate clinical trials as a treatment option to patients after cancer diagnosis, as well as when to do so.
7. Difficulty in completing the consent process effectively, especially for low literacy groups and non-English speakers.
8. Lack of supportive tools to assist in communication around the consent process.
Unfortunately, there is little evidence to guide oncologists or research staff in implementing best practices for recruitment or retention-- in particular for patients from minority groups or those who are over 65 (who are even less likely to be offered participation in a cancer clinical trial than are majority and younger populations, even if they are medically eligible.) According to a number of experts, such approaches need to:
- Guide research staff to make improvements in organizational practices and procedures;
- Enhance staff attitudes and beliefs about cancer clinical trials and their importance to delivering quality cancer care;
- Enhance patient-centered communication skills.
(References omitted due to space constraints but available upon request.)
The literature is sparse, and best practices, when they do exist, are seldom shared and rarely systematically “tested.” While compiling effective practices --such as those through this website-- is enormously helpful, it is not sufficient. We need to identify practical, evidence-based, patient-centered approaches to maximize the efficiency of community oncology practices to ensure that each patient has the opportunity to have that conversation discussed above. We believe the time is ripe to begin to test and evaluate best practices in accrual --especially for minority groups--using a proven quality improvement framework.
To read about ENACCT’s initiatives on this subject, see http://www.enacct.org/our-programs/national-learning-collaborative
From your perspective, what will it take to create optimal conversations between a patient and a doctor about clinical trials?