Educating and Engaging Patients to Better Navigate Their Entire Cancer Journey -- from Diagnosis through Treatment and Survivorship
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125
Supporter(s)
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$16,175
pledged of $5,000 goal
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4226
days ago
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Funded!
This project was successfully funded.
- This project was successfully funded on 2013-07-06
About our project
Update – Scroll to bottom to see the beautiful Villa in Mexico that you could win a week at by donating!
PatientsWithPower is a finalist in the NCI/ONC Crowds Care 4 Cancer Challenge: Supporting Survivors. The contest will be judged on a number of factors, among the most important is “co-design” with patients and care providers. This means we really need your feedback on what we are building. Please either make comments in the comments section or email us directly. We would love to hear from you!
The Problem we solve:
Imagine you’ve just been told you have cancer. Once past the shock, the first thing that probably comes to mind is, “What is cancer, exactly, and how am I going to beat it?”
As important as those questions are, patients rarely get satisfying answers before giving “informed consent” to begin treatment. And when they leave active treatment, they wonder, “How will I get healthy again and stay that way for the rest of my life?”
We formed PatientsWithPower to help patients answer these questions and empower them to take control over their treatment and recovery. We educate them, engage them and help them navigate their entire cancer journey — from diagnosis through treatment and survivorship.
Every day, over 4,200 Americans are diagnosed with cancer and face the daunting challenge of having to decide quickly on treatments that will affect the rest of their lives. Most are unprepared for that difficult task, and the path ahead is frightening and uncertain. Still, patients want knowledge, power and control over their futures.
We believe strongly that patients themselves are the key to optimal treatment decisions, restored health and longevity. That’s why we’re building patient-centered solutions that make complex medical decisions tractable, treatment manageable, and survivorship a return to ordinary life.
OUR SOLUTION:
Our web based software application is currently tailored to help newly diagnosed women with breast cancer. It captures their diagnoses, presents personalized treatment options based on the country’s most well-respected, evidence-based guidelines, and shows a timeline of their treatment and how it will impact their lives.
Aligned with the Crowds Care 4 Cancer: Supporting Survivors, we’re adding the ability to document treatment history and generate Survivorship Care Plans for patients exiting active treatment.
HOW PATIENTSwithPOWER WORKS:
At the time of diagnosis, a breast cancer patient is given a pathology report that contains detailed information about her type of cancer.
We ask the patient to enter this data, so we can determine the treatment options appropriate for her personal situation.
We use this data to navigate the NCCN guidelines and trace out a patient’s treatment options. The National Comprehensive Cancer Network (NCCN) is a 23-member consortium of the nation’s leading cancer centers that publishes medical practice guidelines for over 40 types of cancer. You can access these guidelines yourself (see nccn.org or nccn.com), but our personalized software makes deciphering these 100+ page documents unnecessary.
To help patients learn about the treatments, we include information from the NCCN patient guidelines in our context-sensitive help system.
Patients are concerned about more than medical facts and risks in their treatment decisions. How long will the treatment take? How will their work and family lives be affected? Healthcare providers have scant time or ability to help the patient with these factors. That’s why we integrate the treatment path with a timeline that shows how long each treatment will take and a calendar for day-to-day appointments.
To support patients entering survivorship, we’ll enhance the application to include treatment summaries and plans for followup doctor visits, mammograms, and other tests.
CLINICAL EVIDENCE SUPPORTS OUR SOLUTION
The use of patient decision aids to promote informed decision-making and patient-engagement has been rigorously studied for years. The benefits are widely recognized. For example, a Spanish study published in 2011 concluded, “[Patient Decision Aids] in breast cancer not only increase patient knowledge of the illness, leading to more realistic expectations of treatment outcomes, but also reduce passivity in the decision-making process and facilitate the appropriate choice of treatment options in accordance with patient medical and personal preferences.”
For our part, we’re beginning a two-year, NCCN-funded research project with world-class doctors at UCSF to study the acceptance and effectiveness of our application when used with lung cancer patients.
How We Empower Patients:
PATIENTSwithPOWER is all about enabling Patients to take an active role in their care and arming them with the best resources available. Our aim is to make PatientsWithPower a “Home Base,” where patients can find all the educational resources they need to learn about their specific treatment options, based on their specific diagnoses. We offer decision aids to help them decide upon their treatment plans, and we make sure to include family, work, financial, cosmetic, fertility, and survival risk factors in the decision framework. We want every patient to feel secure and confident that they’ve made the best decision about treatment.
We do this today for breast cancer patients by offering:
- an individual account on our secure server where your personal health information is stored automatically. You’ll never need to re-enter information about yourself to get answers. Login again and you’re where you left off.
- a context-sensitive Help system that explains key patient decisions and details about specific treatment options such as surgery, reconstruction, chemotherapy, radiation, targeted therapy, and endocrine therapy. We include material from the NCCN Patient Guidelines.
- translation via NCCN guidelines of your diagnosis into your treatment options
- a timeline showing the duration and recovery period for each stage of treatment
- mapping of important, personal events (weddings, holidays, planned vacations, return to work dates) to the timeline, with fine granularity of treatment dates
- printable treatment summary to discuss with doctors, nurses, caregivers
- ability to share your treatment decisions and calendar electronically with your personal doctors via a simple screen selection
As patients exit active treatment, we intend to offer them an array of empowering capabilities to support them in survivorship.
- a personal Survivorship Care Plan, generated initially by their specialty care provider, per IoM recommendations and ASCO guidelines
- a system for calendaring followup doctor visits, complete with alerts and reminders
- standard-of-care practices from NCCN for monitoring patients in Survivorship. Doctors are advised to monitor anxiety & depression, cognitive function, exercise, fatigue, and many more issues. We show you the medical practices used to detect and react to patient needs.
- educational content for understanding the troublesome conditions and for advice on good nutrition, exercise, and healthy living
How We Help Hospitals, Doctors & Clinical Professionals
By addressing the needs of patients well, we also help their doctors and nurses. Our application when used in clinical settings provides an excellent vehicle for patient-doctor communication. Especially during initial consultations after a cancer diagnosis, our visual “blueprint” of the treatment options and specialists involved can help clear the fog patients normally experience. More importantly, after patients leave the clinic, they can login to PatientsWithPower and review all the topics discussed during the day. And they can seek answers from our system at 4am without placing a phone call to you.
We’re excited about our plans to help doctors create Survivorship Care Plans for patients. We know this is a prohibitively expensive process, and we intend to streamline the way you extract data from your EHR and draft the plans today. More importantly, the plans you produce will go into your patients’ accounts on PatientsWithPower, where they can update their appointment adherence, note health problems they experience, and take care of distributing information to their doctors themselves.
Most important of all, you’ll be in compliance with the ACOS/CoC standards for Survivorship Care Plan creation and ensure accreditation and NCI certification.
Regulatory Compliance
Each user has an account on our secure server where her information is stored, and she has complete control of that information. Under HIPAA, that makes us a “non-covered entity” and not subject to regulation.
How We Will Spend Your Contributions:
PatientsWithPower is the only company making the NCCN guidelines easy, visual, and personal. Unfortunately, we have to pay NCCN an expensive license fee every year to do this. Proceeds from your tax-deductible contributions will be used to cover this expense for 2013 and allow us to provide our application to breast cancer patients and their extended healthcare teams for FREE, while continuing to develop the Survivorship Care Plan capability.
Who We Are:
Founders
Bill Guthrie, co-founder and CEO
Bill has devoted his professional life to pushing the envelope on advanced technologies and disruptive businesses in Silicon Valley. Early in his career, he designed advanced semiconductors (AMD, Trilogy), led a thin film multi-chip packaging startup (Polylithics) and marketed leading-edge electronic design software (Meta-Software, Synopsys). As the Internet emerged, he focused on building a company that offered one of the industry’s first SaaS web applications that is now a de facto standard for R&D Analytics in the IC industry (Numetrics, acquired by McKinsey & Co.). In 2008 he experienced a life-changing event when his wife was diagnosed with breast cancer. Their overwhelming experience navigating the treatment decisions, enduring the treatment and entering survivorship planted the seed that set in motion PatientsWithPower.
Bill earned his BSEE and BSME from NCSU summa cum laude, and an MBA from Harvard University.
Gloria Webster, co-founder and VP business development
Gloria’s enjoyed wide-ranging success in several entrepreneurial endeavors, primarily in Business Development and International projects. A Harvard MPA (Masters of Public Administration, International Trade & Development), two-year Harvard Dively Award winner, & Morehead Scholar (UNC-Chapel Hill), Gloria specializes as catalyst and manager of multi-party, multi-variate “win-win” business partnerships, like the Beijing Great Mall project (1st majority foreign-owned Joint Venture in China: a million-square foot mixed-used Real Estate/Technology & Intellectual Property transfer project in partnership with the Beijing Textile Industry, 1992-98). For companies like Security Pacific Trade Finance and Mitsubishi Global Investment Banking Group (Tokyo) Gloria led financing deals with companies in the USSR, Turkey and Japan.
Independently, she structured and consummated financing for a low-income housing project in New York City. Gloria’s father died too young of a brain tumor, fueling her undying commitment to PatientsWithPower.
Thank you for considering supporting our project on MedStartr. We look forward to your feedback. Please use the comments tab and we will see you there.
Thank you also to ONC and NCI for your support of our idea and for selecting us as finalists,
Yours Truly,
Bill and Gloria
p.s. All donations will be entered into the Villa Raffle – Get one week at our amazing villa in Mexico!
Beautiful, isn’t it? To see more images and learn more about this beautiful property, please visit here.
Here is the full description:
“About Casa Luz
A fabulous family house, Casa Luz has plenty of space for up to 12 family members and friends, with good separation of space for adults and kids, plus a pool and a huge garden. Located a level, 10-min walk north of the Garden and close to Ole Ole Restaurant and the Habla Hispana language school, this sprawling property, all on one level, would be perfect for a family reunion – or for those who simply want to green oasis within the city center.
Casa Luz has six bedrooms, including two master suites in a separate cottage. In the main house, there are two other good-sized bedrooms, plus two small single bedrooms. The bedding configuration is: one king bed, 2 queen beds, 4 twin beds, plus one queen sofa bed and one portable crib for infants. Each master bedroom has its own beautifully tiled bathroom, and the four bedrooms in the main house share two bathrooms. There is also a powder room.
Fully staffed with a maid and handyman, Casa Luz is the perfect place to kick back and let yourself be pampered. Imelda the maid keeps the house spotless, and she can do your ironing for an extra tip. Handyman John Tends the garden and any maintenance issues.
Please note: For groups with 7 or more people, we do need to bring in an additional chambermaid to help with the cleaning. There is an additional $ 65 USD per week fee for this extra maid. When the second maid is there, one of the maids would then have extra time for preparing breakfast and an occasional dinner (you pay extra for the current food).
There is parking space for 3 large vans at the front of the property – a rarity in San Miguel! High-speed DSL is available for a $ 40 connection fee. The separate sitting room has a TV with Spanish and English channels, including CNN, and both a VCR and a DVD player with a good selection of videos and DVDs. The main living room is in fact a ‘great room’ with the dining room at one end, with plenty of extended space for big dinners or entertaining. There are two kitchens, one a smaller facility near the TV room and the smaller bedrooms, handy for those midnight snacks or for blending Frothy cocktails!
You will enjoy the indoor / outdoor living at Casa Luz. Various sitting / relaxing spaces inside and a covered terrace, open courtyard and sunny outside pool patio provide you with multiple retreats and quiet areas. In other words, everyone can find a special corner to enjoy and relax in this unique property!"
Good Luck!
- Have a question? If the info above does not help, you can ask the project creator directly.
Rewards
For $10 or more
7 Supporter(s)
Anyone --- For your Tax Deductible Donation of Any Size, thanks to Cancer101.org, 88% goes right to us! This is far more efficient than most charities and faster too. In turn, we’ll be supporting another great cause – paying for our license to the NCCN guidelines that we use to show our users (patients) their standard-of-care treatment options. This level and all the following levels include our thanks and numbered inclusion in our online Scroll Of Support listed in date order of contribution. Thank You!
For $10 or more
38 Supporter(s)
NEW! Win a Stay at Villa Luz in San Miguel de Allende, Mexico! For each $10 you contribute (tax deductible), you'll get a chance to win the Grand Prize drawing for an incomparable week's stay at Villa Luz in historic San Miguel de Allende, Mexico. Renowned for its colonial architecture & picturesque cobblestone streets, this U.N. heritage site city is one of Mexico's top travel destinations. See the Detail at left for more information. Dates are flexible subject to availability before June 30, 2014. Transferable. Drawing to be conducted by MedStartr at end of campaign. Current Backers automatically entered in the drawing (1 chance per $10 - applies to all other rewards!)
For $25 or more
6 Supporter(s)
Patients – We’re here to help you, and if you can help us we’ll send you a special Invitation Code to access our software and create your own account. We’ll gladly provide phone and email support for any questions you have about using the software or your treatment (remember, we’re not a substitute for your docs)
For $50 or more
12 Supporter(s)
Family & Friends -- honor someone you love that has experienced cancer by contributing at this level. At his or her request, we’ll reach out and offer access to PwP and other resources we have available and show them personally how it works.
For $100 or more
6 Supporter(s)
Doctors, Hospitals, Partners --- For this level of support, we’ll send you an Invitation Code to evaluate our solution for breast cancer patients (other cancers forthcoming). At your request, we’ll schedule a special meeting to answer your questions and ask for your suggestions.
For $1000 or more
0 Supporter(s)
Doctors --- Show your patients you care about getting them involved in their treatment. Contribute at this level and get a special invitation code for you and one for your patients so you can be linked and information can be shared. A year’s supply of QuickStart guides, a personal visit from PwP, and support is included.
For $2500 or more
0 Supporter(s)
Hospitals --- You’ll get full support for all your breast cancer patients: special invitation codes to link you and your patients, Quickstart Guides, training, and support. Set your hospital apart from competitors by showing you have our special service to offer your patients. No charge to use the software if you participate with us on Medstartr.
For $2500 or more
0 Supporter(s) Limited (1 left of 1 )
Patients & Caregivers - Thinking about getting away and enjoying time together with your loved one? This is a special, personal reward for only one contributor at this level a getaway weekend for two in Sonoma County, California. You’ll enjoy two nights at a bed & breakfast and a catered hillside dinner under a gazebo overlooking vineyards and the legendary Sonoma Valley wine growing region. This may be your chance to create lasting memories.
For $10000 or more
0 Supporter(s)
Partners --- Show the cancer community you care about patient-centered solutions. Contribute at this level and be honored on our home page as a sponsor that allows our service to be offered FREE to patients.
For $25000 or more
0 Supporter(s)
All of the above and get … well, you tell us. Give us a call and we can discuss options that will help you meet the needs of your institution and your patients or providers to give and get better care.
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