Patient Navigator

Patient Navigator’s Research Empowers Clients to Manage Their Care

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Medical Research on Rare Condition Opens New Doors

Bonnie came to Patient Navigator with a daughter living with a common psychiatric disorder and a very rare syndrome (fewer than 400 in the world) that manifests itself with congenital problems in multiple body systems. As it turns out, both the syndrome and disorder are linked; Patient Navigator identified experts who have worked with similar patients. We connected Bonnie with them, as well as with the two physicians in Asia who first described the rare syndrome in publication.  Before she came to us, Bonnie had felt overwhelmed with the volume of information on the internet and wasn’t sure how to distinguish the good from the bad. We identified what leads were worth pursuing, which were not credible, and wrote a comprehensive report backing our findings with published, peer-reviewed scientific data.

 Finding Treatment Options for a Rare Cancer

Chris is 41-years old, diagnosed with an intracranial germ cell tumor (a type of brain tumor) several years prior. He had received radiation treatments at that time, but later it spread to his spinal cord. After more radiation, he came to Patient Navigator looking for answers on how to beat his cancer for good. We researched the latest studies relevant to his disease, identified the best scientists in the world doing it, some of which were in Japan, and put Chris in touch with them to get another opinion. We also found more than a dozen relevant clinical trials, some overseas, that explore new treatments.

New research and treatment options offer hope.

Deena suffered from severe OCD, Tourette’s, and several personality disorders, and had been institutionalized since she was 10 years old. A family member identified a residential treatment program, but the program turned her down because her condition was too severe. Concerned that she was not receiving the best care, the relative contacted Patient Navigator to explore some alternative treatment options, especially deep brain and transcranial magnetic stimulation. Patient Navigator  researched these new methods sometimes used with patients having similar afflictions, presented experimental data to help support the client in making an informed decision, and put the family in touch with one of the top clinicians doing research in this field.

Turning to Patient Navigator when the doctor doesn’t explain.

Mary had her thyroid removed as treatment for papillary thyroid cancer, and her physician suggested she undergo radioiodine treatment. She also was told she was “BRAF positive,” but unfortunately was not told what that meant. Patient Navigator

• identified the standard of care for patients who had been down a similar path, and compared that to her planned treatment.
• explained what “BRAF positive” meant and what it meant for her.
• identified a leading endocrinologist in her state that she could see for a second opinion, after consulting with other top physicians who practice in the field.
• answered her many specific questions regarding the safety of those living with her after radioiodine treatment.”

Hope’s parents were terrified for their daughter.

A young woman, Hope had been sick for a long time with many symptoms that never seemed to add up to a diagnosis or appropriate treatment. She had been shuttled between doctors and hospitals in search of help, to no avail. Dr. Zorrilla summarized, analyzed and researched Hope’s long, complicated health history. Her expertise provided the family with a foundation to make informed choices that they could not have made on their own. This resulted in better treatment for their daughter. The family appreciated Dr. Zorrilla’s help in communicating with other physicians. When things improved, Hope’s mother wrote us to say that “Dr. Zorrilla’s ‘mother’s heart’ comforted the heart of this mother throughout a very difficult health journey for my daughter. I am sincerely, forever grateful. Thank you Patient Navigators!”

Peter’s father needed answers, and fast.

Peter contacted Patient Navigator on behalf of his 80 year-old father who was recently diagnosed with metastatic gastric cancer in order to see what treatment options were available as well as to try to obtain test results (receptor status) from the treating hospital. Patient Navigator performed a literature search and presented the family with the latest options and obtained the results from the physician’s office within two days of consultation.

After 10 years of suffering, hope for this patient.

Frank called Patient Navigator for assistance in researching the underlying cause of his son’s debilitating autoimmune neuropathic condition which had gone without successful treatment for over 10 years. Patient Navigator carefully reviewed medical records, prepared a medical summary and generated a differential diagnosis. In conducting a literature review on the possible causes of the patient’s symptoms, Patient Navigator also reached out to top specialists who had published articles on particular diagnoses being considered. Our researcher was fortunate to receive responses from these specialists who were forthcoming in sharing their professional insight and even making suggestions as to other diagnostic possibilities. Finally, Patient Navigator sought out local specialists with whom the family could consult. In this case, a specialist who was on the medical advisory board of a neuropathic pain support group was selected.

A family felt lost trying to cope with a child’s addiction problems.

Katrina was worried about her out-of-state friend who was trying to cope with addiction issues in her own family.  The friend was overwhelmed and unsure of where to find help.  Patient Navigator located four counselors in her geographic area who specialized in addiction and related behaviors.  We connected her friend with three local and on-line support organizations.  Patient Navigator also researched current studies published in relevant medical journals about the physiology and psychology of addiction to help the family understand the challenges faced by a person with substance abuse problems.  The family used these resources to get the help and support they needed.“They listened well to my needs and tailored an approach to put me in touch with healthcare providers who specialize in the treatment I am looking for.”

Connie’s breast cancer had spread to the bones.

She asked Patient Navigator to research the options of cryoablation and radiofrequency (thermal) ablation. We prepared for her a package with the latest academic and clinical findings. We communicated directly with doctors and researchers on her behalf, and helped her find specialists and treatment options. Patient Navigator updates Connie on information on relevant medication/treatment. Connie says, “They are professional and empathetic and have helped me find specialists and treatment options. They also send me updates on information they find about relevant medication and treatment. I will continue to work with them until the cure is found.”

Elizabeth, a multiple myeloma patient, was recovering from a stem cell transplant when she contacted Patient Navigator.

She wanted to explore follow-on treatment options. Patient Navigator provided a summary of medical literature on tandem stem cell transplants, a targeted list of questions for her consultations with Sloan-Kettering cancer specialists and information obtained directly from the lead researcher, in Belfast, Northern Ireland, of the most current study on tandem stem cell transplants.

Joan suffered from a rare, painful and debilitating condition.

Her doctors failed to diagnose her for 14 months. Part of Joan’s frustration was that doctors were unprepared and uneducated about her condition – which of course affected her care. Patient Navigator wrote a three-page summary of Joan’s diagnosis, symptoms, medications, questions and treatment goals. This way, whenever Joan went to a new doctor, Patient Navigator sent these briefing materials before the visit. Improved communication with her doctors has meant better treatment for Joan. “They were there for me when a chronic painful illness had me worn out and I was unable to stand up for myself.”

Nancy was in complete despair because she felt humiliated and dismissed by her doctors.

A young woman, Nancy was suffering from several painful and unusual medical problems that her doctors failed to connect with a proper differential diagnosis.  Patient Navigator researched her symptoms and suggested several possibilities for Nancy to raise with her doctors.  When these proved correct, Nancy was finally taken seriously by her doctors who began a treatment plan.

Mark’s unrelenting neck pain and failed treatments brought him to Patient Navigator.

Mark asked us to research his condition and suggest additional treatment options.  We researched his chronic pain and specific condition and were able to suggest several specially trained physical therapists as well as alternate approaches to resolving his neck pain, such as an ergonomic workplace assessment and Tai Chi or yoga to relieve the stress that exacerbated his pain.

Joe’s wife was in the late stages of a cancer of unknown primary origin.

Joe contacted Patient Navigator because he was worried that her doctors hadn’t given them all the treatment options available. Patient Navigator provided Joe with a list of clinical trials and arranged a visit with a cancer specialist at the National Institutes of Health. We provided educational materials on this cancer and his wife’s treatment so that he could help her with side effects. Joe’s wife passed away, but he told Patient Navigator that he was grateful for our help because “I now know that I did everything I could.”