The organization will continue to maintain and develop their website www.tatumuntied.org providing a single source for educational materials and resources.
Development and Distribution of Clinical Trials Training Resources
For cancer patients and their families, the process of identifying and selecting appropriate clinical trials is overwhelming and further complicated by a difficult to use search engine and difficult to understand, relatively advanced medical terminology. Doctors are not compensated by insurance companies to assist patients through this process, so unless the patient’s doctor happens to be involved in a trial for which the patient qualifies, patients and families are thrust into a time consuming self-teach mode while already overwhelmed by the receiving a metastatic cancer diagnosis. Further they have typically already, (or will shortly) exhausted any paid time off their employers may offer. This situation results in additional stress on a patient and their families that will negatively impact their quality of life, and potentially have negative impact on the outcome of any treatments they may receive. The organization will produce videos and other training materials to quickly educate families of metastatic cancers about clinical trials and how to successfully and efficiently navigate web based databases to identify and secure placement in appropriate clinical trials.
Diagnosis and Treatment Education Campaign
The organization will develop and distribute, to primary care physicians and hospitals easy to understand materials (digital videos to be hosted online and independent of specific healthcare providers or companies) to help patients quickly prepare for a cancer diagnosis and what to expect in the weeks immediately following such a diagnosis. The intention is that physicians will make patients aware of these resources at the time of the initial examination that results in the necessity for further testing to determine if cancer is present, so that a patient may use the materials, between the time of initial examination and a diagnosis, to educate and prepare themselves and their families, thus allowing them to understand and make treatment decisions that will positively impact their prognosis and outcomes.
Peer-To-Peer Support Groups
The organization will advocate for patients battling cancer and their families by sponsoring low overhead peer-to-peer support groups to be facilitated by volunteers that are qualified to do so, either by past education / experience, or via training sponsored by the organization.
Chemo Buddies Program
Unfortunately, chemotherapy treatments are administered at infusion centers that are open during normal work hours. As a result, many times, family members and / or friends are unable to support their loved ones by escorting them to treatment and serving as advocates. Patients are often forced to drive themselves to / from, and endure hours of treatments alone. These treatments include the administration of medications such as antihistamines that result in drowsiness and other side effects that can make travel dangerous after treatment. Further, these medications potentially impair the patient’s ability to advocate for their own care. In addition, due to the sheer volume of information that a new cancer diagnosis presents, many times the limited education they receive from the infusion center regarding the therapy is not retained. The organization will pair patients with volunteers to provide transportation to and from, and support during chemotherapy treatments. The organization will provide said volunteers with general information regarding these treatments and how they may help to advocate for those they are accompanying. Training regarding privacy laws and requirements will also be provided.
Support of Research
Patient Populated Database
Under the current cancer treatment framework, limited information is collected and shared during and after treatment is received. Many factors that potentially affect the outcome of treatment and clinical research are either not recorded, or at best, not shared between physicians and clinicians working within different companies. Further, minimal effort is put forth by the medical community to understand what factors influence negative outcomes of treatment, and failures of clinical trials. There is an opportunity to collect and make use valuable information that could influence future treatments and potential strategies for curing cancers from EVERY patient. Much of that opportunity is being squandered. The organization will develop and maintain a patient populated and searchable database to anonymously share statistically pertinent information regarding cancer patients diagnosis, genetic information, diet, environment, treatments (traditional and alternative), and outcomes, etc. The hope is that by making this information publicly available analysis of this data may become a valuable tool to physicians and researchers as a guide in developing new strategies for treating and curing cancers, and to better understand what is influencing drastically different outcomes in patients with similar cancers.
Trial Driven Participant Search
The current model for matching patients to trials is participant driven trial search. As a result, the medical community is relying on patients, who in many cases, if not most, are unable to fully understand the terminology and language used in clinical trial descriptions and qualification requirements to find and select a clinical trial. Further, the patient, in most cases, is unable to appreciably comprehend the proposed mechanisms of action of the experimental treatments in order to identify the factors that may make the trial an appropriate trial for them. As a result, patients spend hours or days of their precious remaining time finding a trial that they believe they may qualify for, and wait weeks to be seen by the trial team, just to find out that they do not qualify for the trial, or that little clinical or research value would result from their participation. Many physicians compare this model to having the patient throw a dart at a wall full of trials while blindfolded. The organization will lobby within the medical and clinical research communities to change this model to a trial driven participant search instead. The premise is this, instead of unqualified patients searching a trial database to find appropriate trials, we will lobby for a system in which qualified trial administrators search a database of patients to determine those best suited to provide valuable data and to maximize clinical benefit to the participants.
Sponsorship of Research
The organization will financially support publicly funded research projects, with a preference given to those focused on innovative treatments of metastatic cancers and / or improvement in the quality of life for people battling metastatic cancers and / or research focused on finding a cure for various cancers.