Decision Support Service (DSS)
We want to make DSS available to all newly diagnosed cancer patients. DSS combines crisis counseling with the power of SCOPED, a decision support paradigm (see http://www.guidesmith.org/scoped/) to help patients improve communication with their health care team, reduce treatment-related anxiety, increase confidence in decision making, and reduce post-treatment regret.
A propos de vous
Section 1: You
Prénom
Bonnie
Nom
Crawford
Adresse électronique
Organization
The Wellness Community-Greater Cincinnati/Northern Kentucky
Pays
États Unis, OH, Hamilton County
Section 2: Your Organization
Nom
The Wellness Community
Téléphone
(513) 791-4060
Adresse
4918 Cooper Road, Blue Ash, OH 45242
Votre organisation est-elle une
organisation à but non lucratif
Pays
États Unis, OH, Hamilton County
Your idea
Name Your Project
Decision Support Service (DSS)
Country and state your work focuses on
États Unis
Describe Your Idea
We want to make DSS available to all newly diagnosed cancer patients. DSS combines crisis counseling with the power of SCOPED, a decision support paradigm (see http://www.guidesmith.org/scoped/) to help patients improve communication with their health care team, reduce treatment-related anxiety, increase confidence in decision making, and reduce post-treatment regret.
Innovation
What makes your idea unique?
Decision Support Service enhances UCSF Professor Dr. Jeff Belkora's SCOPED model by combining it with traditional crisis counseling techniques. This integrated approach is currently being studied with funding from the Centers for Disease Control and Prevention at our site and 2 other Wellness Communities for use with blood cancer patients. We have found the model so powerful and beneficial, both subjectively and in the preliminary research findings, that we are now making this service available off-study for patients with any type of cancer.
Do you have a patent for this idea?
Non
Impact
This Entry is about (Issues)
What impact have you had?
Through the first 3 years, 54 patients have been counseled on study and 12 off-study. The hope is this grant will provide the resources to make the service more available off-study. Of the on-study patients, 19% were ethnic minority, 36% retired, 19% on disability and 13% working making <$40K/year. See results for the data relevant to the on-study patients.
Problem
Cancer patients make multiple treatment related decisions throughout their journey. Many do so based on assumptions made from conversations with friends and family or on their lay interpretation of literature (often from inaccurate website sources). Patients often must decide between choices they do not fully understand. Patients are reluctant to ask questions either for fear of challenging the doctor or because they perceive their health care provider to be hurried. In the absence of accurate information and without consideration of their personal treatment objectives, patients often have great anxiety and post-treatment regret.
Actions
Decision Support Service will guide patients in developing questions for their healthcare providers and empower patients to have these important conversations so they can make well-informed treatment decisions consistent with their personal treatment goals.
Results
On-study participants experienced a significant reduction in anxiety (p=<0.05) and distress (p=<0.05) Question self-efficacy was significantly improved (p=<0.05). 85% of patients took their questions to their health care provider (HCP) and 84% felt the service led to a more productive appointment with their HCP. 85% of HCPs answered most questions. 42% talked with their HCP about cancer clinical trials (compared with 3-5% in general population).
What will it take for your project to be successful over the next three years? Please address each year separately, if possible.
Year 1: We will need a laptop computer and portable printer in order to be able to provide this service at doctors' offices, hospital bedsides or patients' homes. Goal – providing the service to 30 (off-study) individuals within 48 hours of referral. Outreach to oncologists’ offices will be necessary to raise awareness of service and prompt referrals.
Year 2: Goal: 60 patients (including those formerly on-study as CDC funding ends 8/12).
Year 3: Goal of 60-80 patients served. Dissemination of results at regional and national conferences. Training of other service providers (hospital, clinic and community health care workers).
What would prevent your project from being a success?
Simply put, the biggest obstacle would be the lack of funding. These sessions are labor intensive, averaging 3 hours per person, including scheduling, counseling session (avg. 90 mins.), documentation, and faxing to documents to health care providers.
How many people will your project serve annually?
Moins de 100
What is the average monthly household income in your target community, in US Dollars?
$1000 - 4000
Does your project seek to have an impact on public policy?
Oui
Viabilité
A quel étape votre projet en est-il ?
En place depuis 1 à 5 ans
In what country?
États Unis, OH, Hamilton County
Is your initiative connected to an established organization?
Oui
If yes, provide organization name.
The Wellness Community of Greater Cincinnati/Northern Kentucky, an Affiliate of the Cancer Support Community
How long has this organization been operating?
Plus 5 années
Does your organization have a Board of Directors or an Advisory Board?
Oui
Does your organization have any non-monetary partnerships with NGOs?
Non
Does your organization have any non-monetary partnerships with businesses?
Non
Does your organization have any non-monetary partnerships with government?
Non
Please tell us more about how these partnerships are critical to the success of your innovation.
Approximately 150 words left (1200 characters).
What are the three most important actions needed to grow your initiative or organization?
Obtain funding to purchase laptop computer and portable printer.
Obtain funding to support dedication of counselors' time to project.
Outreach to area oncology practices to create awareness and referrals.
The Story
What was the defining moment that led you to this innovation?
The SCOPED model has been well studied and its effectiveness well documented. The 5-yr project through the CDC is yielding strong data supporting the effectiveness of combining the SCOPED model with crisis counseling for people with blood cancer. Observing the immediate effect on the participants and reviewing the preliminary outcome data led us to offer the service whenever possible at our own expense to individuals off-study.
A defining moment for me occurred when I met with a woman who had suffered a stroke years earlier who was so self-conscious about her impaired speech that she rarely talked to others. When a very aggressive treatment approach was recommended, she did not question her doctor about other options. Despite her advanced cancer, she was feeling well, and because her primary objective for treatment was to maintain her quality of life, she was reluctant to enter the proposed treatment. Rather than "speak up" to the doctor she became non-compliant with visits to the oncologist.
Through the Decision Support Service, once I established rapport and trust, she shared with me her concerns and treatment objectives. For her, seeing her words on paper had the effect of validating her viewpoint. Together we brainstormed questions that would help her find her voice when she went to the doctor. At one point, as she danced all around the issue of palliative care should her disease become terminal, I suggested she ask the doctor, "Can you help me to not suffer if I decide not to undergo aggressive treatment?" She literally collapsed onto my desk, crying, and asked, "It's really OK for me to ask that?" Ultimately, she took her question list to her doctor's appointment and they had a very productive conversation in which they agreed they would work together to make her quality of life the primary goal of treatment.
Tell us about the social innovator behind this idea.
Margo Michaels, Executive Director of ENACCT (Education Network to Advance Cancer Clinical Trials), developed a proposal for a 5-year demonstration project in collaboration with The Wellness Community - National. This project, initially called ENACCTing Wellness, was funded by a cooperative agreement with the Centers of Disease Control, and provided decision-support counseling services at three Wellness Community sites (Cincinnati, Philadelphia and San Francisco) for people with blood-related cancers.
The theorectial model - SCOPED - was developed by Jeff Belkora, Ph.D. Belkora is a faculty member at the University of California, San Francisco School of Medicine who conducts research as an Assistant Professor of Surgery in the Philip R. Lee Institute for Health Policy Studies and promotes patient participation in medical decisions in both academic and community settings. Using an engineering science approach to a psychosocial concern, SCOPED allows individuals facing treatment related decisions to objectively evaluate treatment options in light of personal treatment objectives.
How did you first hear about Changemakers?
Through another organization or company
If through another, please provide the name of the organization or company
Ashoka/AMGEN Foundation
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Commentaires
Dear Bonnie,
In reviewing your entry for Decision Support Service, it seems you have achieved significant changes in the dynamic that accompanies cancer treatment, based on a solid model.
The question I have is, how would you think creatively about increasing the impact of this intervention beyond 100 patients annually? I think you highlight that the problem you are solving is shared across all patients receiving cancer treatment (and I would say, all patients, for every condition, everywhere).
In a global, entrepreneurial way of thinking, how could you change the equation for 1000, 10,000, 100,000 patients?
Thanks for entering and letting me take a look,
Ted
Thank you, Ted, for taking the time to review our proposal! Your comments and question are very much appreciated.
We know from our research that the model as it is currently designed and implemented is highly effective and beneficial, but time consuming so limited by resources. To make this service more readily available to individuals, two things must happen: 1) We must evaluate the effectiveness of a more streamlined version of the model, and 2) we must disseminate knowledge of the model via professional training.
I am eager to take on both of these challenges. Currently, I am experimenting with variations of the model (with off-study patients) to see what seems to be the most logical way to streamline the process, then hope to be able to test the resulting method to insure it is at least as effective and beneficial as the original approach. My partners in Open to Options have submitted a proposal to AOSW to present at the May 2010 conference to teach this approach to other oncology professionals with the hope of beginning the dissemination process.
Thank you again for your interest.
Hi Bonnie,
That is very helpful information to have - maybe you might add this to the idea/proposal, a "what-if" the resulting method is as effective, so that the competition judges might see how the investment now can really benefit a lot of people. Seems like a great program, glad I had the opportunity to learn about it,
Ted
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