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May 20 is National Clinical Trials Day. Celebrate with us by recognizing the Clinical Research team at Renown Health!  The root of every medication, treatment and procedure in healthcare can be traced back to research. From the beginning of the history of medicine, research has always played a crucial role in improving the lives of patients around the world, leaving a permanent mark on how we expand our medical capabilities to this day.  Renown Health’s Clinical Research team, in partnership with the University of Nevada, Reno School of Medicine (UNR Med), are leading that effort in our very own community. As our in-house leaders of clinical trials, this team is dedicated to advancing the science of medicine to help further our bottom line of making a genuine difference in the health and well-being of the patients they serve.   Trial by (Medical) Jury  Every day looks different for the Clinical Research team, especially when it comes to interacting with patients, providers and “sponsors,” which are the organizations providing the treatment for the study. One fact always remains true: communication and collaboration are key, especially among the team who act as the face of this process.  Meet Lisa English (pictured above on the far right in a blue shirt), a Lead Clinical Research Coordinator at Renown who serves as the study "project manager." One aspect of Lisa’s day-to-day is seeing patients through their clinical trials from start to finish.  It all begins with the setup.  “Before we can launch a study, there is a lot of back-and-forth dialogue between everyone involved to ensure the best fit,” said Lisa. “Sponsors will come to us with novel treatments, such as medications or devices, and the inclusion criteria that patients need to meet in order to qualify for the study. We then immediately jump into working with the providers, looking closely at the science and comparing the treatments to what is on the market already.”  From there, Lisa coordinates conversations between the providers, sponsors and study teams to gauge everyone’s capacity based on the length of the study, ensuring everyone involved has the time to dedicate to the process. Next, the providers identify patients that meet the criteria for the study, and together, the team decides where the patient visits will happen and discusses any potential barriers that may affect patient retention. The budget is clearly defined at this stage, set up to make sure no patient is ever billed for medical costs incurred as a result of the study.  Often, research participants are seen within the specialty clinics throughout the health system, while other times the Clinical Research Coordinators see patients at the recently centralized Clinical Research Office at Renown Regional Medical Center. This location provides an essential public-facing space for the community to learn more about clinical trials and demonstrates the breadth of resources available at Renown to sponsors to strengthen external partnerships and research funding opportunities.  Once the study officially begins, team members like Lisa will set patients up for a “screening/qualifying visit.” During this appointment, she makes sure patients get scheduled for their lab work, imaging scans and anything else the provider may need to make an executive decision on whether or not the patient is a good candidate for the study.  “I build it all in Epic,” said Lisa. “The study information, directions, requirements and next steps are all loaded in Epic for easy tracking. We are also required to input any notes in the sponsor’s electronic data capture website. All the information I track is inputted without protected health information (PHI), so every patient is completely anonymous.”  After the patient officially qualifies, the study goes full steam ahead. Team members like Lisa and the providers receive continual updates from sponsors on the status of the study.  “Throughout the entire process, I make sure patients get scheduled for everything that meets the requirements for the study,” said Lisa. “I meet with patients one-on-one to discuss their needs and concerns and ask questions about the study, organize their appointments and charts and deal with any issues or pivots that may arise. It’s very important that every patient fully understands what is going to happen with their care.”  The Clinical Research department strives to serve as a care partner to patients, providers and clinics they work with. The majority of our Clinical Research Coordinators are trained phlebotomists and medical assistants, performing their own assessments such as lab draws and electrocardiograms (ECGs) to streamline the research visit process and reduce resource constraints on the clinics and health system.  Lisa typically sees a couple of patients per week, depending on the study and where patients are in the cycle. Depending on the complexity of the trial, patients may see the research team only one time or several times over many years. Typically, clinical trial patients are seen in clinic every 2-4 weeks. There are many tasks required before, during and after a research visit to ensure everything runs smoothly, so Clinical Research Coordinators dedicate an average of 5-11 hours of work per patient, per visit.  Regardless of patient load, each employee in the Clinical Research department – as well as participating teams across Renown and UNR Med – always step in to help each other out. According to Lisa, the environment is immensely supportive.  “We have a program here at Renown to train employees who have never done clinical trials,” said Lisa. “We love seeing people get more engaged with the important work we do, and every department has been great at collaborating with us. Everyone brings a different perspective.”  At the end of the study, Lisa gathers all the information and collects notes into a zip drive or paper binder for archiving. The sponsor lets the Clinical Research team, providers and patients know whether they are on the trial drug or on the placebo. The teams use the data gathered during the study to publish a report or present at conferences, promoting the critical research done to better the lives of patients in our community, and potentially, the world.  “I appreciate the time everyone gives us to make sure our research is successful,” said Lisa. “It feels great to work together to make a difference, improve healthcare quality and save lives.”  Behind-the-Scenes, Yet on the Frontlines  The impact of research studies transcends hospital walls, and this can all be attributed to the dedication of our Clinical Research department. The constant collaboration between this team, lab science, medical assistants and providers, cardiology technologists, sonographers, finance teams and our partners at UNR Med is crucial to safeguarding the success of the studies.  Devoted to keeping research close to home, Renown and UNR Med teamed up to form the Clinical Research Office (CRO) in 2021. With the strength of northern Nevada's largest not-for-profit health system and Nevada’s first medical school, this team is dedicated to giving our community access to the latest care innovations.  “At UNR Med, we are working with students, residents and academic faculty; on the Renown side, we are working with clinicians and community participants,” said Amber Emerson, Manager for Community Outreach and Research Engagement for UNR Med.  “Everything we do is data-driven,” added Kristen Gurnea, Manager of Clinical Research for Renown. “Our main goal is to optimize our impact and provide a community benefit for our patients. The scope of our roles in the Clinical Research office is very diverse.”  To help meet the growing need locally for healthcare and cutting-edge treatment solutions, the CRO has continued to grow, expanding its research capabilities and helping bring new medications, medical devices and more to patients across northern Nevada and northeastern California.  “Once upon a time, our team had only six members; today we have grown to a team of 25,” added Diana Torres, Research Resource Analyst for Renown. “We used to be considered one department, including Medical Education, and we have since branched off into our own cost center. We branched off even further and created a separate Genetics department that runs the Healthy Nevada Project. Throughout this process, the Clinical Research department was always the main point of the umbrella.”  “We participate in hospital-wide outreach and marketing, and we feel this has really helped us get the word out about our department,” added Raul Arellano, Research Resource Analyst for Renown. “In fact, we doubled our clinical trial portfolio from last year.”  The CRO currently operates over 100 clinical trials locally in cardiology, endocrinology, infectious disease, neurology, pediatric and adult oncology, pediatric sub-specialties and pulmonology.   Behind the curtains of in-person research, the CRO is home to several experts who help turn our research studies into a reality, from budgeting and billing to barrier-breaking and building relationships.  “I help with barriers patients and Clinical Research Coordinators are facing, building connections and relationships inside and outside of our health system,” said Kristen Gurnea. “I enjoy handling all the supporting pieces that are required for studies to happen.”  “My role changes every day,” added Jenna Berger, Administrative Assistant for the CRO at Renown. “Some days, I’ll be helping coordinate patient stipends and going through document management to ensure we have all necessary signatures. Other days, I will be planning events – like Clinical Trials Week – for our department and creating marketing materials and fliers.”  “Our day-to-day involves going over anything related to research financials,” added Diana Torres. “We handle sponsor billings, process efficiency and collecting revenue for research contracts, and we collaborate closely with our Finance department and Revenue Integrity in order to accomplish this. It’s important for us to make sure all billing on both the sponsor and patient side is taken care of, especially because patients should never receive a bill for medical services they receive for the trial. A year and a half ago, we started doing budget negotiations for research contracts,” said Diana Torres. “We are proud to help clinical teams with any training they may need on these negotiations as well as billing reviews and allocations.”  Seeing patients progress during a study and transform before their eyes inspires the CRO team to continue doing what they do every day.  “I’ve been here for many years, first working on the floor as an oncology nurse and transitioning to oncology research in 2005,” said Anna Winchell, Cancer Protocol Nurse for Renown. “I love getting to know the patients and seeing them progress into a healthy lifestyle.”  Medical students and residents at UNR Med also play a significant role in the research process, advancing medicine by exploring causes and novel treatments for a wide range of conditions, including HIV, muscular dystrophy, gastrointestinal disorders, infectious diseases and more. Medical research at UNR Med is headed by committed research coordinators, community outreach managers, grants managers, pharmacists and physicians.  “I oversee scientific review and help the physicians that come to us for those resources,” said Amil Trujillo-King, Medical Research Coordinator at UNR Med. “I guide medical students in their research protocols and help with different projects to improve research activities for both students and medical residents.”  It takes a village to make clinical research happen. Because of that, the ACRO cannot thank the following teams enough for moving mountains for the future of medicine:  Renown Health and UNR Med leadership for demonstrating the integrated health system’s commitment to expanding access to clinical research in our community within both the Renown / UNR Med affiliation and Renown active strategic plans.  Renown Pharmacy especially Research Clinical Pharmacist Tim Morton, who supports all clinical trial medication dispensing and patient education across all clinical trials at Renown.  Accounts Payable for having a huge impact on patient and employee reimbursement.  Renown Medical Group for their participating providers, especially in oncology, cardiology, pulmonology, pediatrics, endocrinology and neurology, who are involved in research year after year.  Marketing and Communications for helping with printed materials and raising awareness for clinical research at Renown and UNR Med.  An Affiliation to Last Through the Ages  A collective, shared vision of exploring community health – that is the impetus behind the affiliation between Renown and UNR Med. By leveraging resources across both institutions, the CRO has maximized their impact, giving the people of northern Nevada greater access to new interventions and treatments and promoting an impassioned culture with patients, providers, residents and medical students.  “Community-based research always sat well with me,” said Amber Emerson. “As Renown and UNR Med, we have this unique opportunity to shape clinical research here in northern Nevada. We always make sure we present research in a meaningful way that speaks to the work we produce and demonstrates the opportunities we offer. After all, participating in clinical research doesn’t mean our patients are ‘guinea pigs’ – quite the opposite! They are partners in their health care, and we support them through providing access to novel treatments.”  “Research is my passion, and my career has spanned broadly from grants administration to study coordination,” added Valerie Smith, Clinical Research Center Administrative Manager at UNR Med. “I am excited to be at the forefront of research frontiers in northern Nevada.”  Through robust engagement and collaboration with healthcare providers, department administrators, internal research team members and leadership, the strength of this affiliation is unmeasurable. The CRO’s ultimate goal is to have clinical trials be the standard of care for every condition that Renown and UNR Med treats. Clinical research participation is all about patient autonomy, shared decision-making between patients and their providers and advancing medicine to save lives. From their beginnings as a small group of passionate researchers to their present reality as a leader in the research space in northern Nevada, their efforts do not go unnoticed.  “The success of our department is inspiring,” said Amil Trujillo-King. “Renown and UNR Med supports the wellbeing of all employees and contributes directly to the growth of the department.”  “When I first joined Renown in Patient Access, I didn’t realize that we had a research department; with a strong healthcare background in my family, I knew I wanted to grow in my career, and our expanding Clinical Research office was that next step,” said Raul Arellano. “With our affiliation with UNR Med, it’s especially inspiring to be able to apply what I learned as a Patient Access Representative to help further outcomes for our patients through managing our finances.”  Through their unwavering commitment to research excellence and patient-centered care, the CRO will continue to pave the way for groundbreaking medical discoveries and improved outcomes for patients for years to come.  “Fundamentally, we’re working to build a culture of research in our community because we believe it is the right thing to do. Our community deserves to have access to clinical trials and novel care close to home with a dedicated team to support them every step of the way,” closes Kristen Gurnea.

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Becoming a caregiver or playing a more active role in another’s healthcare is a big responsibility. At some point, almost all adults will support an aging parent or a loved one in need. Keeping track of their needs and wellbeing, while also prioritizing your own can become overwhelming. It’s important to know: you are not alone, and help is available. Read on for 11 tips to help you manage your time, your own wellbeing and your loved one’s care. Self-care comes first. When your main priority is the person in your life who needs care, it’s easy for your own needs to take the backseat. Give yourself time each day to focus on your personal wellbeing. It’s hard to give a loved one the care they need if your own needs are not met. Prioritize the Activities of Daily Living (ADL). Make a note of what ADLs your loved one can do alone, what they need help with and what activities require the most help. This will help you work through the day with them, as well as plan out how the day’s activities will go. Do a home safety audit. Do showers, bathtubs and steps have safety grab bars? Look around the house for additional tripping hazards, like rugs or electrical cords. If your loved one struggles with day-to-day navigation of the home, consider scheduling an occupational therapy appointment. This type of therapy helps a person develop or maintain the motions required to accomplish daily tasks. You might also qualify for a referral to in-home healthcare, such as Home Care. Have the hard conversation. The best time to discuss views about end of life care and to learn what choices are available is before a life-limiting illness or crisis occurs. With advance care planning, you can help reduce the doubt and anxiety related to decision making at the end of life. Completing an Advance Directive is a great tool to sort out all these decisions before they’re needed. Attend a free workshop to learn more and complete this important document. Identify when you need respite. Respite care involves receiving a short-term break from caregiving. Organizing in-home care for your loved one will allow you to step away and tend to your needs. By identifying what kind of respite care you are seeking, you can find the right person to provide you with that much-needed break. Don’t wait until you feel overwhelmed, plan ahead. Write down insurance contact information. Have a direct connection to the right insurance professional for support and advice. If your loved one is eligible Medicare, this is a good opportunity to review their current selections and if they would benefit from a Medicare Advantage Plan or Medicare Supplement Insurance. Seeking out expert advice or information on Medicare options is a great way to navigate this. Consider calling a broker, or attend a free educational seminar with Senior Care Plus. Gather legal and financial information. Make a list of all existing legal documents and financial accounts that your loved one has. These might include a will, advance directive, power of attorney, bank accounts or investment accounts. If you have questions about how to manage them, or need assistance in setting up additional framework, reach out to a lawyer, legal service, financial adviser or bank representative. Create an inventory of medical information. Identify where all of your loved one’s medical records are, as well as a list of providers or healthcare practices where they have received care. Consider if you should have your loved one give you Proxy Access in MyChart, which allows you to access all the features in MyChart on their behalf, including viewing upcoming appointments, viewing test results and emailing a doctor on their behalf. Make a list of what others can do. Think about all the little (and big) things that need to happen, and write down tasks that others could take care of you. When someone says “let me know what I can do” you’ll be ready with a pre-written list of items they may be able to assist with. Tasks could include tackling around-the-house repairs, scheduling lawn work, helping to walk the dog, taking a car for an oil change and cleaning. Find programs and events for social enjoyment. If and when possible, seek an activity outside of the home. Look for community centers that have programs for seniors, recreational activities or meals that you can patriciate in together. If leaving the home is not an option, arrange for visits or in-home activities, such as movie nights, card games or time to visit with family. Research long-term options. If you will be considering a nursing home or assisted living, make a list of amenities that you and the person you are caring for would like. Take this list with you when visiting potential locations to make sure you don’t forget to ask about each item.

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We plan for the birth of a child, weddings and retirement, but rarely do we discuss how we want to be cared for at the end of our lives. Getting through this challenging conversation and completing an Advance Directive can give you peace of mind that your loved ones will not have to make difficult choices on your behalf. The best time to complete an Advance Directive is now – don’t wait until a life-limiting illness or crisis occurs to discuss your views about end-of-life care and to learn what choices are available. By preparing in advance, you can help reduce the doubt and anxiety related to decision-making for your family if you cannot speak for yourself. What are Advance Directives? An Advance Directive is a document that states your choices about medical treatment and names another person to make medical decisions on your behalf if you are unable to. This document allows you to make legally valid decisions about future medical care.  “Completing your Advance Directive is a gift you give your family,” says Director of Palliative Care, Mary-Ann Brown RN, MSN. “The stress associated with these difficult decisions is decreased if everyone knows what is important to you and what you want at the end of life.”

Read More About Plan Early: Completing Your Advance Directive