SummaryThe Decision Services unit in the Breast Care Center at the University of California, San Francisco offers newly diagnosed patients a personal assistant to accompany them to key consultations with surgeons and oncologists. These premedical interns help patients develop a written list of questions and concerns for their providers, accompany patients to their medical appointments to take notes and record the visits, and make sure all patient questions are addressed by the attending physician. The goal is to help the patient communicate more effectively with his or her physician and hence improve patient decisionmaking. An evaluation of specific components of the program found that it has improved visit preparation, patient-provider communication, and patient decisionmaking and knowledge. Similar findings have come out of meta-analyses and other systematic evaluations of various aspects of the program that have been implemented in other settings. The program is now expanding into other clinics at the University of California, San Francisco through its successor program, the Patient Support Corps, which deploys undergraduate students as patient advocates earning academic credit through a service learning program.Strong: The evidence consists of meta-analyses and other systematic evaluations of specific components of the program implemented at the University of California, San Francisco and in other settings.
Developing OrganizationsUniversity of California, San Francisco, Breast Care Center Decision Services
Use By Other OrganizationsThe UCSF program has provided technical assistance and training to national and international organizations, who are disseminating elements of the program. The innovators use the vehicle of the Patient Support Corps (http://www.patientsupportcorps.org) to spread this concept to other clinics at UCSF and to other organizations. This service learning program allows students to earn academic credit while they accompany patients to visits. They help patients connect with high-quality information, list questions, and make notes and recordings of their consultations with providers. Dartmouth has joined the Patient Support Corps and replicated the program with several clinics in their medical center. The Cancer Support Community (http://www.cancersupportcommunity.org) has implemented the question-listing/question-coaching aspect of this program nationally in the United States. Its implementation is called Open to Options and is available through a nationwide toll-free helpline (1-888-793-9355) in English and Spanish. Open to Options is also available in person at 14 of their 42 office locations, with a full rollout planned through 2014. The Edinburgh Cancer Centre in Scotland studied the full UCSF program in a randomized, controlled trial for prostate cancer patients and found increases in decisional self-efficacy and reductions in decisional conflict and regret.13 Various components of the program have been adopted by resource centers in northern California, including the Palo Alto Community Breast Health Project, the Cancer Resource Center of Mendocino County, and the Humboldt Community Breast Health Project. The Cancer Resource Center of Mendocino County has conducted the consultation planning, recording, and summarizing program in different forms for hundreds of patients facing various types of cancer, including breast, prostate, ovarian, colorectal, head and neck, and lung. The Pancreatic Cancer Foundation and the Education Network to Advance Cancer Clinical Trials have also implemented elements of the UCSF decision support program.
Date First Implemented2003
The program was implemented in its current form in 2003. Components of the program had been developed and tested earlier.
Gender > Female; Vulnerable Populations > Women
Many newly diagnosed breast cancer patients are overwhelmed with their situation and do not know which questions to ask the doctor or how to use the information provided to make treatment decisions. Research suggests that certain strategies can address these problems, including connecting patients with decision aids, helping them list questions, and making notes and audiorecordings for them. Yet few programs offer such services.
- Significant information needs: A recent systematic review found that cancer patients have significant information needs throughout the diagnostic and treatment process.1
- Multiple barriers to meeting these needs: Breast cancer patients face many barriers that often prevent them from getting the information they need. Some patients withhold questions and concerns during consultations for fear of wasting the doctor’s time, while others do not know how to raise their concerns or have a discussion with their doctor. One study found that 64 percent of breast cancer patients reported three or more barriers to communication with their physician.2 A needs assessment conducted at the University of California, San Francisco (UCSF) found that breast cancer patients faced significant barriers to gathering information, asking questions, and remembering responses. Specifically, patients told of reviewing inadequate, conflicting, or overwhelming information before appointments and not knowing which questions to ask. Many would “freeze up” during appointments and forget to ask important questions. When they did ask questions, the doctor’s answers would often “go in one ear and out the other.” Since the initial needs assessment, researchers continue to document these barriers, most recently among highly educated and affluent patients whose fear of being labeled “difficult” inhibits questioning and other important behaviors. 3
- Often unrealized potential of prompting and support: Research shows that prompting patients to write down their questions increases their participation in consultations4,5 and that providing audiorecordings and summaries of visits increases patient recall and satisfaction.6 However, few cancer programs offer such services.
Description of the Innovative ActivityThe Decision Services unit in UCSF's Breast Care Center assigns a personal assistant (a premedical intern) to help patients get appropriate decision aids, brainstorm and write down a list of questions and concerns for their providers, make notes and recordings of their visits, and make sure all questions are addressed by the attending physician. The goal is to help the patient communicate more effectively with doctors and hence improve decisionmaking related to treatment. Key elements of the program are described below:
- Pre-appointment preparation: After patients schedule their medical visit, a premedical intern sends them an educational video and written decision aid. (Between 2010 and 2011, 672 patients received such materials.) The intern also attempts to contact patients to offer help in developing questions for their providers and to accompany them to their visits to assist with audiorecording and taking notes and to generally support them in communicating with their provider. During the question-listing session, the interns use a checklist to help stimulate patient questions, concerns, and priorities; they do not provide any medical advice or clinical information. Between 2010 and 2011, interns attempted to contact 1,771 clinic visitors to offer assistance; 1,030 responded and were found to be eligible for such services, 584 accepted the service, and 356 ultimately worked with interns to develop a list of questions and concerns over the telephone using the worksheet. The worksheet helps clarify six areas (known as SCOPED), as outlined below:
- Situation: The diagnosis or other key facts
- Choices: Testing and treatment options available
- Objectives: The patient’s priorities, goals, and concerns
- People: Patient and provider team roles and responsibilities
- Evaluation: How the choices affect the objectives (including prognosis)
- Decisions: Which choice is best and next steps
- Assistance during appointment: The intern e-mails the completed question list (known as a consultation plan) to the physician, who reviews it before the consultation. The intern also accompanies patients to their visits, audiorecords the session, takes notes, and reminds patients of any questions that were not addressed by the doctor.
- Postvisit support: The intern creates a written summary of the provider’s responses to the patient’s questions, with the summary being organized in parallel structure to the original question list. The patient receives both the audiorecording of the visit (on compact disc) and the printed consultation summary.
- End products: The end products include the following:
- Consultation plan: A list of questions and concerns in the patient’s words, given to all parties before the visit
- Consultation recording: An audiorecording of the patient visit
- Consultation summary: A summary of the physician’s responses to patient questions and concerns
- Internal process-oriented records: Collection of data by staff on every facet of the program, from the reasons patients accept or decline services to the surveys conducted before and after service delivery
Context of the InnovationThe Decision Services unit at the university is part of the Breast Care Center. One of the Breast Care Center's goals is to tailor treatment to patient preferences and biology, based on medical evidence and clinical performance. The Decision Services unit emerged from doctoral research at Stanford University by Jeff Belkora and colleagues with their adviser, Laura Esserman, who is now the Director of the Breast Care Center. Their line of research started in 1994 when Dr. Belkora analyzed data from a series of 23 focus groups with 250 breast cancer survivors conducted at the Palo Alto Community Breast Health Project. These sessions revealed a shared sense of confusion and anxiety about treatment options and decisions, stemming in large part from information overload and other barriers to patient-provider communication. After Dr. Belkora and colleagues conducted an additional needs assessment with patients, it became clear that the patients were not always able to express their priorities and preferences to clinicians in the context of a clinical consultation nor retain the advice and information presented during the visit. This finding led to the idea of creating a consultation planning and recording program to assist patients in preparing for their encounters through the use of a structured preconsultation worksheet. Other researchers were also evaluating use of prompt sheets, summaries, and recordings at the same time.8,10 Later, researchers integrated question-listing and audiorecording with the work on decision aids.12
ResultsAn evaluation of specific components of the university program found that it has improved visit preparation, patient-provider communication, and patient decisionmaking and knowledge. Similar findings have come out of several meta-analyses and other systematic evaluations of various aspects of the program that have been implemented in other settings.
Strong: The evidence consists of meta-analyses and other systematic evaluations of specific components of the program implemented at the University of California, San Francisco and in other settings.
- Improved visit preparation, decisionmaking, communication, and knowledge at UCSF's Breast Care Center: Evaluations of various aspects of the program found that it has improved visit preparation, patient-provider communication, and patient decisionmaking/knowledge, as outlined below:
- Better visit preparation: A 2009 evaluation of 137 question-listing sessions found that participating patients had an average (mean) of 23 questions after the session, up from 9 before. Self-efficacy scores from 115 of these patients (those responding to a survey) averaged 8.1 (on a scale of 1 to 10), up from 6.7 before the session.7
- Better communication: A quasi-experimental evaluation of 119 patients found that consultation planning reduced barriers to communication and improved both patient and physician satisfaction in the intervention group compared with controls.8 An evaluation of 37 patients using both the question-listing and audiorecording services found that they improved patient-provider communication. Physicians reported that the program gives them a means for better understanding the patient’s concerns and needs because it helps patients organize and clarify their thoughts in advance of the appointment.9
- Better knowledge and decisionmaking: Several studies suggest that the program has enhanced decisionmaking and knowledge, as outlined below:
- An evaluation of 37 patients found that the preappointment planning session resulted in a mean change in decisional self-efficacy of 7 percent and that pre-appointment planning and assistance during the appointment were associated with a 19-percent reduction in decisional conflict (although some of this effect may be attributable to the clinical consultation itself).9
- A quasi-experimental evaluation of 24 patients found that recording the consultation improved the quality of decisionmaking compared with those in a control group.8
- A 2009 evaluation of the recording and note-taking service found that 89 percent of those responding to a survey had reviewed the notes from their consultations within 6 weeks of their visits.7
- An evaluation of 383 responses to condition-specific quizzes found that the number of correct responses increased from 46 to 73 percent after patients reviewed the decision aids sent to them. The same evaluation found that decisional conflict, a measure of a patient’s uncertainty regarding the best course of action, improved after patients reviewed the decision aids.7
- Similar findings in other settings: Meta-analysis and other systematic evaluations of specific program components are consistent with the findings from the university, as outlined below:
- Higher satisfaction and better recall: A meta-analysis of 11 randomized, controlled trials (RCTs) involving more than 1,013 patients and clinicians found that “between 83 and 96 percent of participants found recordings or summaries of their consultations to be valuable. Five out of nine studies reported better recall of information for those receiving recordings or summaries. Four out of seven studies found that participants provided with a recording or summary were more satisfied with the information received.”8
- Asking more questions: A general meta-analysis of 33 RCTs involving 8,244 patients found that interventions to help patients address information needs before consultations (for a range of conditions and settings) generated small but statistically significant increases in question-asking and patient satisfaction. These increases were greater than those achieved through use of inperson coaching and written materials alone.10 A separate systematic review of question prompting in cancer patients found that the approach encouraged patients to ask more questions, particularly about their prognosis.11
- Increased knowledge: A Cochrane Collaboration review of 27 RCTs found that decision aids were associated with a statistically significant 15-percent improvement in knowledge.12
Planning and Development Process
Key steps in the planning and development process included the following:
- Developing formal charter: Program leaders created a formal charter laying out the vision for the program.
- Surveying stakeholders: A survey of key institutional stakeholders found no major resistance to the concept. Physicians were receptive to the idea as long as it did not interfere with the usual clinical workflow.
- Assessing patient needs: A patient needs assessment identified the key types of support that patients wanted from the program.
- Adapting existing conceptual framework: The university adapted the Ottawa Decision Support Framework by linking specific services to patient visits. This conceptual framework focuses on helping patients express their needs (questions and concerns) before a visit, providing decision support during the visit (e.g., audiorecording and summarizing the provider’s answers to patient questions), evaluating the impact of the decision support after the visit, and anticipating the patient’s next pass through the “visit cycle” (e.g., if they go from the surgeon to a plastic surgeon or oncologist).
- Using decision-analytic framework to guide prompt sheet and consultation summaries: The Breast Care Center decided to use SCOPED to guide the development of the prompt sheet and consultation summaries. This decision framework builds on decades of development in engineering, psychology, economics, nursing, education, statistics, and other fields.
- Screening interns: Premedical interns are screened through "critical incident" interviews that ask for examples of how prospective candidates have been effective or ineffective in past jobs at relevant skills such as nondirective interviewing; low-inference paraphrasing and summarizing; displaying emotional intelligence in stressful situations; complying with applicable policies, procedures, and regulations; and communicating across cultures and generations.
- Training: Each premedical intern undergoes a comprehensive 2-day training program that includes sessions on key policies and procedures (e.g., how to offer the service and set appropriate boundaries and expectations with patients), simulations of the various components of the services (using de-identified cases), and review and practice on key models of low-inference paraphrasing and summarizing and on the SCOPED checklist. Following the formal session, interns are closely supervised and observed for 6 weeks. After this period, facilitators are certified for solo practice. To maintain certification, interns attend weekly case review meetings led by the developer of the program or another experienced facilitator. These meetings use the critical incident technique to reflect on productive and unproductive practices. In 2008, the university also developed a 150-page policies and procedures manual and a 200-page reference guide to assist interns on an ongoing basis.
- Design, testing, and ongoing evaluation: The service unit applies program theory to guide continuous improvement, using interlocking plans: a strategic plan summarizing the context, charter, purpose, vision, mission, and goals of the program; a service utilization plan summarizing how patients will interact with premedical interns and what support the interns will provide; an operational plan describing what human resources, supplies, information technology, facilities, and other resources will need to be marshaled in support of the program; an evaluation plan describing how to collect, manage, analyze, and report data for key audiences; and a financial plan describing the costs of this program. The goal is to continuously improve and adapt to a changing environment while staying true to the underlying conceptual model and principles. Evaluation is an ongoing process, with assessments of early iterations of the program playing a key role in the refinement and improvement process. In 2008, the university invested in an online, multiuser, relational database to capture program data more efficiently. Program leaders plan to use this resource to share de-identified materials with patients and researchers, thus stimulating continuous improvement. Finally, the university recently adopted the RE-AIM framework (reach, effectiveness, adoption, implementation, maintenance), the Plan-Do-Study-Act improvement methodology, and the critical incident technique to facilitate further improvement.
Resources Used and Skills Needed
- Staffing: At the university, frontline program staff consist of 5 to 10 premedical interns who have been accepted into a 1- or 2-year program between college and medical school. In general, however, frontline staff can be paid employees or volunteers, and they may be peers (e.g., survivors, former patients), students (e.g., premedical, medical, nursing, counseling), or professionals (e.g., nurses, social workers). At the university, internships are highly competitive, attracting applicants from across the country. University interns spend 4 days per week working with faculty as research assistants and 1 day per week engaged in the program. The program also has a paid administrator who coordinates scheduling and oversees frontline staff. In the last year, the program has expanded to other clinics at UCSF under the umbrella of the Patient Support Corps, which trains and deploys undergraduate students as patient advocates providing the decision support services.
- Costs: The estimated cost of providing the service ranges from $50 to $150 per patient visit, depending on the level of support offered and the utilization rate of the service by patients (higher utilization spreads the fixed costs over more patient visits). At the university, research or program assistantships pay the full stipend for the interns, so the cost of paying their salaries is not borne by the program.
Funding SourcesUniversity of California, San Francisco; Informed Medical Decisions Foundation
The program is funded through Breast Cancer Center research funds, grants, and donations. Supporting agencies over the years have included the Arthur Vining Davis Foundation, the U.S. Department of Defense, and the Informed Medical Decisions Foundation, which is currently providing funding. Going forward, program leaders plan to explore the potential for insurers to reimburse program services.
Tools and Other Resources
- The program Web site is at: http://www.decisionservices.ucsf.edu.
- A Web site with information about the SCOPED model is at: http://www.scoped.org.
- Information about the Patient Support Corps can be found at: http://www.patientsupportcorps.org.
- Jeff Belkora's Web site (available at: http://www.jeffbelkora.com) provides a list of relevant academic references (http://www.jeffbelkora.com/evidence), among other articles and resources.
- With more than 200 pages, the Decision Services reference guide and training program is available to collaborating organizations. Contact the program developer, Jeff Belkora, for more information.
- Would-be adopters can apply to attend training sessions or to solicit customized training and technical assistance from the University of California, San Francisco. These customized programs feature technical assistance with program design, followed by inperson or Web-based training followed by remote supervision through Web- or telephone-based case review meetings. Contact the program developer, Jeff Belkora, for more information.
Getting Started with This Innovation
- Find strong clinical champion: Laura Esserman, MD, Director of the university's Breast Care Center, participated in every step of development and rollout. Physicians must initially be at least tolerant of the program. Most will recognize the benefit to patients and will be supportive as long as it does not disrupt workflow.
- Use or adapt formal processes and frameworks: At the university, use of the Ottawa Decision Support Framework, SCOPED, RE-AIM, and Plan-Do-Study-Act has contributed to program success.
- Build and maintain steady referral pipeline: Although the program can be run from within a clinic or in a centralized resource center, tight integration and coordination with the clinic schedule is necessary to achieve enough volume for the service to justify having trained staff. To that end, provide continuous feedback to referral sources (e.g., clinic schedulers) on how the program has benefited patients.
- Explain role clearly to frontline staff: Frontline staff must understand their role clearly, including that they must remain neutral, avoid giving medical advice or information, and maintain certain role boundaries with patients. For example, even though program staff are often easier to reach than physicians, they cannot relay messages from doctors to patients. Likewise, program staff must not touch medical records or perform any task for which they are not trained, as the risk of errors that could compromise quality and safety is too great.
- Hire paid administrator: This individual oversees frontline staff and coordinates the integration of the program into clinic workflow.
Sustaining This Innovation
- Consider telephone consultations: The service can be delivered by telephone or in person. As a cognitively oriented program, the service is well suited to the telephone, especially if the patient has access to e-mail or a fax machine and can review drafts of the consultation plan. In other settings, prompt sheets have even been self-administered by patients, who use them as a set of "frequently asked questions" and circle or modify the ones that apply.
- Tap into multiple funding sources: The university's Breast Care Center faculty members believe that this program helps attract highly productive premedical interns, so they are willing to pay 100 percent of interns' salaries, even though they only receive 80 percent of their time. The program meets the needs of the faculty (who are looking for highly qualified research assistants), premedical interns (who are looking for patient interactions), patients (who are looking for support), and the university medical center (which is committed to providing patient-centered care).
- Consider using trained volunteers: Other organizations have been able to attract volunteers to perform the service because it features such heavy patient and physician interaction, is intrinsically rewarding, and can help people gain experience as they position themselves for career changes or further training. The volunteers must be properly screened, trained, and supervised by professionals. Volunteers could receive academic or other credit.
- Consider adopting individual components (if entire program is not possible): As noted earlier, discrete elements of the program, such as consultation planning, have been found to be effective on their own.
- Consider charging fees to those who can afford it: The program could generate revenues through use of a sliding-scale fee schedule that requires full payment from those who can afford it but offers a reduced rate or free service to low-income patients. In an environment where patients pay out of pocket for complementary therapies and coaches, some might be willing to pay the $50 to $150 cost.
- Document program on continuous basis: The university has created a reference guide that documents almost every aspect of the program. This living document is continuously updated. Because the program operates in an environment where one must be sensitive to patient and provider confidentiality and the potential for error or conflict, the university is particularly focused on documenting the boundaries, conditions, and scripts that govern the program’s practices.
- Engage in continuous improvement: The university seeks feedback from all stakeholders, including physicians, patients, family members, clinic staff, nurses, and administrators and reports to stakeholders whenever program changes occur as a result of such feedback. For example, after physicians requested that examination rooms not be used for consultation planning, that service was moved into conference rooms and later to the telephone.
Contact the InnovatorJeff Belkora, PhD
Director of Decision Services, Breast Care Center
Associate Professor, Surgery and Health Policy
Institute for Health Policy Studies
University of California, San Francisco
3333 California Street., Suite 265
San Francisco, CA 94121
Innovator DisclosuresDr. Belkora has not indicated whether he has financial interests or business/professional affiliations relevant to the work described in this profile; however, information on funders is available in the Funding Sources section.
Belkora JK, Loth MK, Volz S, et al. Implementing decision and communication aids to facilitate patient-centered care in breast cancer: a case study. Patient Educ Couns. 2009;77(3):360-8. [PubMed]
Belkora JK, Loth MK, Chen DF, et al. Monitoring the implementation of consultation planning, recording, and summarizing in a breast care center. Patient Educ Couns. 2008;73(3):536-43. [PubMed]
Belkora JK. Mindful collaboration: prospect mapping as an action research approach to planning for medical consultations [dissertation]. Palo Alto: Stanford University; 1997.
Belkora JK, Katapodi M, Moore D, et al. Evaluation of a visit preparation intervention implemented in two rural, underserved counties of Northern California. Patient Educ Couns. 2006;64(1-3):350-9. [PubMed]
Belkora JK, Edlow B, Aviv C, et al. Training community resource center and clinic personnel to prompt patients in listing questions for doctors: follow-up interviews about barriers and facilitators to the implementation of consultation planning. Implement Sci. 2008;3:6. [PubMed] Also available at: http://www.implementationscience.com/content/3/1/6.
Pass M, Volz S, Teng A, et al. Physician behaviors surrounding the implementation of decision and communication aids in a breast cancer clinic: a qualitative analysis of staff intern perceptions. J Cancer Educ. 2012; DOI: 10.1007/s13187-012-0402-8. [PubMed]
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Belkora JK, Volz S, Teng A, et al. Impact of decision aids in a sustained implementation at a breast care center. Patient Educ Couns. 2012;86(2):195-204. [PubMed]
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5 Belkora JK. Mindful collaboration: prospect mapping as an action research approach to planning for medical consultations [dissertation]. Palo Alto: Stanford University; 1997.
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7 Unpublished data available from Jeff Belkora, PhD, Director of Decision Services, Breast Care Center, Assistant Professor, Surgery and Health Policy, Institute for Health Policy Studies, University of California, San Francisco, California.
Scott JT, Harmsen M, Prictor MJ, et al. Recordings or summaries of consultations for people with cancer. Cochrane Database Syst Rev. 2003;(2):CD001539. [PubMed]
Belkora JK, Loth MK, Chen DF, et al. Monitoring the implementation of consultation planning, recording, and summarizing in a breast care center. Patient Educ Couns. 2008;73(3):536-43. [PubMed]
Kinnersley P, Edwards A, Hood K, et al. Interventions before consultations for helping patients address their information needs. Cochrane Database Syst Rev. 2007;(3):CD004565. [PubMed]
Dimoska A, Tattersall MH, Butow PN, et al. Can a "prompt list" empower cancer patients to ask relevant questions? Cancer. 2008;113(2):225-37. [PubMed]
O'Connor AM, Stacey D, Entwistle V, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2003;(2):CD001431. [PubMed]
Hacking B, Wallace L, Scott S, et al. Testing the feasibility, acceptability and effectiveness of a 'decision navigation' intervention for early stage prostate cancer patients in Scotland—a randomised controlled trial. Psychooncology. 2012 May 9. DOI: 10.1002/pon.3093. [PubMed]
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Original publication: April 14, 2008.
Original publication indicates the date the profile was first posted to the Innovations Exchange.
Last updated: December 05, 2012.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.
Date verified by innovator: November 15, 2012.
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