Patient Navigator’s Research Empowers Clients to Manage Their Care
Joan’s problems got worse after surgery.
We were contacted by a patient who sustained a complication from a neurological surgery. Patient Navigator’s Medical Director consulted various specialists on her behalf by phone and email after the patient’s doctors refused to listen to her concerns. We directed her to the specialists who would be able to help her overcome this life-changing complication. Our list of questions for the consulting physicians empowered Joan to get the answers she needed. We worked with her through a grueling set of appointments at the Mayo Clinic to help coordinate the tests, questions and results. The medical mentoring we provided helped Joan to more fully understand what had occurred as a result of the surgery. Joan was grateful for the emotional support we provided during a frightening time.
Specialist after specialist failed to end Richard’s pain.
Richard had suffered for six years from severe, intractable pain in a specific part of his body. He had been researching on his own for years, trying to figure out what the cause might be. He underwent an unnecessary hip replacement due to the wrong diagnosis by an orthopedist. He sought out surgeons in various states and underwent three other surgeries that did not alleviate the pain. His condition had deteriorated to the point where he could not bear the thought of a lifetime of pain. In desperation, he contacted Patient Navigator. We took a fresh look at Richard’s medical history and research. In our own investigation, we ultimately found the answer – a surgeon who could help Richard, right in his own community. We discovered this doctor by meticulously reading the footnotes in a relevant journal article. Richard has a long recovery ahead, but his pain is greatly diminished. He has hope for the future once again.
What cancer trials are available to me?
The results of her post-chemotherapy diagnostic tests were unclear. Had Lou’s ovarian cancer progressed or not? She wanted to prepare for any contingency and asked us to research all clinical trials for which she might be possible. Our Director of Medical Research conducted a meticulous clinical trial search, which he organized and annotated for Lou’s easy use. She was grateful because there is otherwise no simple way to navigate through hundreds of trials. Lou now feels confident that she has planned ahead for whatever contingency awaits.
Who are the best prostate cancer surgeons in the country?
Ben’s doctor had been monitoring his PSA levels for several years. It looked like it was time to start considering treatment options. Ben asked us to find the most experienced robotic prostatectomy surgeons in the country based on experience. He also wanted to dig deeper into treatment options for someone his age. We found top of the line doctors for Ben and provided him with a detailed, personalized research report. Ben felt fully informed, educated and prepared after reading our report to seek out the doctors and treatments that were appropriate for him.
Pancreatic cancer clinical trials.
Will’s wife had managed to navigate him through the early stages of pancreatic cancer and conventional treatment. But when early treatments failed, she and Will wanted help evaluating clinical trials. Patient Navigator conducted a thorough clinical trial search and developed an individualized report for the couple to consider. Through several detailed phone consultations, the mystery and lexicon of trials were explained and Will made a decision to proceed. The couple was relieved to have a professional to guide them through the process.
Natural options for high cholesterol.
Doug successfully managed multiple chronic illnesses, but his cholesterol medicine was giving him bad side effects. He asked us to write him a report that would teach him about the different classes of medications, provide information on nutritional ways to lower cholesterol, and equip him to talk with his doctor about his medication options. Doug convinced his doctor to try a different drug and has felt much better since then.
Seeking options for post-cancer surgery.
Bill had a successful surgery for skin cancer which left him with a hypopigmented scar. We produced a research report documenting all current and experimental treatment currently available to minimize appearance the scar. It was important to differentiate clinical evidence from “marketing” used by equipment manufacturers and dermatologists. Bill was satisfied that he was fully prepared to make an informed, documented choice about his next treatment option.
Early stage prostate cancer options.
Hannah was very worried about her husband diagnosed with early stage prostate cancer. She asked Patient Navigator to provide her with credible information and treatment options about the disease, and to provide detailed biographic information about the country’s leading prostate cancer surgeons. We guided her through the process. Her husband had a successful surgery with an excellent outcome and prognosis. Hannah is hopeful for the future.
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.
Two parents with cancer, less than two years apart.
Wayne was overwhelmed first with his father’s diagnosis and treatment options and asked us for in-depth research. After his father passed away, his mother was diagnosed with a late-stage cancer. Once again, he was very concerned about her doctors, the options she was being given and the hospital where she was being treated. We provided research, investigated various doctors and provided information about palliative care options. Although his mother also died, our client was grateful for our assistance and support during a difficult time.
Clinical research connects client to researchers.
Our client had tried the usual treatments for his chronic obstructive pulmonary disease (COPD) but wanted to go deeper into the clinical research to see if other options, including complementary therapies, might be available to manage his condition. We prepared an in-depth clinical research report which opened up some new possibilities. We facilitated his attendance at a national conference on COPD which we had discovered in our research.
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.”