June 2016

Vol. 43 No. 6

June

Cover Story

https://www.providermagazine.com/Issues/2016/June/Pages/New-Connections-Speed-Up-Care.aspx

New Connections Speed Up Care

<div id="__publishingReusableFragmentIdSection"><a href="/ReusableContent/4_.000">a</a><a href="/ReusableContent/4_.000">a</a></div><div>Think robots that help take vital signs and connect patients with practitioners, virtual video conferencing, and cloud-based consultations and training sessions.</div> <div> </div> <div><img src="/Issues/2016/June/PublishingImages/Sokolovich.jpg" alt="Natasa Sokolovich" class="ms-rtePosition-1" style="margin:5px 10px;" />This may sound futuristic and more fantastic than functional, but telemedicine is coming front and center in efforts to streamline costs, reduce transfers and avoidable hospitalizations, and enable experts to care for patients across town and around the country. It’s here, it’s now, and what’s more, it’s practical, efficient, and more cost-effective than one might think. It is making diabetes, cardiac, and psychiatric care, as well as chronic disease management, advance care planning, and communication across settings, easier and better for practitioners and patients alike.</div> <div> </div> <div>“Be open to the possibilities, and you might be surprised,” says Natasa Sokolovich, executive director of telehealth at UPMC (the University of Pittsburgh Medical Center) in Pittsburgh. </div> <div> </div> <div>There is “never a great time to implement change,” Sokolovich admits, “but there are ways to do things better.” She adds that, putting it all in perspective, telemedicine “isn’t a heavy lift in comparison to what you’ve already done with EHRs [Electronic Health Records] or e-prescribing.”</div> <h2 class="ms-rteElement-H2">How To Approach Telemedicine</h2> <div>According to the American Telemedicine Association, “telemedicine is the use of medical information exchanged from one site to another via electronic communications to improve a patient’s clinical health status.” It includes a variety of applications such as two-way video, smart phones, wireless tools, and other telecommunications <a href="/archives/2016_Archives/Pages/0616/Tips-For-Victory-With-Vendors.aspx" target="_blank">technology</a>.<br><br></div> <div>Telemedicine is not a separate medical specialty; instead, it involves products and services used for the delivery of clinical care—including patient consultations via video conferencing, transmission of still images, remote monitoring of vital signs, continuing education, nursing call centers, and other applications. </div> <div><br>In skilled nursing and <a target="_blank" href="/archives/2016_Archives/Pages/0616/Don’t-Forget-Assisted-Living.aspx">assisted living</a> settings, telemedicine is most commonly associated with video consultations for patients and facilities in rural settings. However, the uses are expanding rapidly. Currently, facilities are using telemedicine to manage acute changes of condition, chronic disease management, wound care, family/patient conferences, and staff education, as well as specialist consultations with psychiatrists, neurologists, and other practitioners. </div> <h2 class="ms-rteElement-H2">Why Invest In Telemedicine?</h2> <div>What is driving the advancement of telemedicine? Why should people care about it?<br><br></div> <div>“The drivers include the creation of alternative payment models and next-generation ACOs [Accountable Care Organizations] liberalizing the use of telemedicine. They’re doing away with rural restrictions for its use, and it’s taking off with initiatives such as CCJR [Comprehensive Care for Joint Replacement],” says Steven Handler, MD, PhD, associate professor of geriatric medicine and director of geriatric telemedicine programs at the University of Pittsburgh, in Pittsburgh.<br><br></div> <div><img class="ms-rtePosition-2" src="/Issues/2016/June/PublishingImages/coverstory.jpg" alt="" style="margin:5px 15px;" />“We’re seeing networks narrow, with hospitals selecting preferred nursing home partners based on their low rates of hospitalizations and readmissions. We think that telemedicine is a tool to help with this.” He adds that there are hospitals working with skilled nursing care centers to establish telemedicine programs to manage acute and chronic conditions. These efforts, he says, can help prevent unnecessary hospitalizations, the cost of which will quickly eat up bundling costs.<br><br></div> <div>“If you reduce what CMS [the Centers for Medicare & Medicaid Services] defines as potentially avoidable hospitalizations, you can improve care and outcomes, while reducing cost,” Handler says. “Telemedicine is a new tool that can help nursing centers develop and sustain new hospital relationships, receive additional sources of funding by participating in some alternative payment models, and provide a new care delivery model.”</div> <h2 class="ms-rteElement-H2">Who’s On Board?</h2> <div>For the most part, long term/post-acute care practitioners are ready for telemedicine, according to Handler. He has conducted two surveys at AMDA—The Society of Post-Acute and Long-Term Care Medicine—conferences, and he says, “What we’ve heard was strong agreement that telemedicine has real potential to improve clinical care both for acute changes of condition to reduce potentially avoidable hospitalizations and speciality care to improve the management of chronic disease.” <br><br></div> <div>The first study involved 435 attendees at the 2015 AMDA annual conference. “Respondents overwhelmingly agreed that telemedicine has potential to improve timeliness of care, as well as fill existing service gaps,” says Handler. At the same time, the physicians disagreed that telemedicine would hurt care effectiveness or jeopardize resident privacy.<br><br></div> <div>When using telemedicine, respondents stressed the importance of technical characteristics such as high-quality audio and video hardware and the inclusion of a high-end electronic stethoscope. The survey results generally proved the hypothesis that practitioners see telemedicine as a useful tool to improve access to clinicians and eliminate the distance between people.<br><br></div> <div>The second survey, conducted earlier this year at the AMDA conference, was designed to determine the perceived utility of providing specialty telemedicine in skilled nursing centers from the perspectives of physicians and advanced practice providers.<br><br></div> <div>“This latest survey was designed to query about the types of services that should be provided as part of telemedicine,” Handler says. “Based on the volume of responses, a lot of people seem to care about this.” He notes that the majority of respondents he spoke with said that they don’t have a telemedicine program but want to learn more about it.<br><br></div> <div>The few who said they currently use telemedicine “love it.”<br><span id="__publishingReusableFragment"></span></div> <h2 class="ms-rteElement-H2">Lights. Cameras. Wound Care.</h2> <div>Wound care nurses are valuable resources, but it’s impractical if not impossible to have one in every facility. However, thanks to telemedicine, it is possible to have that level of expertise.<br><br></div> <div><img src="/Issues/2016/June/PublishingImages/SheriEastonGarrett.jpg" alt="Sheri Easton-Garrett, RN" class="ms-rtePosition-1" style="margin:5px 10px;" />“We started building our case on this concept. Then we started studying the technology and the telepresence utilized in the industry for wound care,” says Sheri Easton-Garrett, MSN, RN, vice president of clinical programming at Brookdale Senior Living in Brentwood, Tenn. She and other team members then selected equipment to use for a pilot.<br><br></div> <div>“We chose the technology we did for several reasons. It was easy to control remotely, and there were other possibilities to use it beyond the wound care pilot. It had a scope to be applicable across multiple levels of care.”<br><br></div> <div>Easton-Garrett and her team have several goals for the pilot. “We are looking at being able to do telewound care and consults with our wound care nurse to determine: Are we using the right product? How is the wound progressing? Are we training staff right?” To do this, Easton-Garrett and her team are using a model of telepresence robot, a sort of skype on wheels, only more sophisticated. The users can zoom in and out and direct the camera in specific directions.</div> <h2 class="ms-rteElement-H2">Careful Planning Key To Success</h2> <div>“Sometimes people want to jump to technology because they think it solves everything,” says Easton-Garrett, but she stresses, “To get the most out of it, you have to go through a planning process. Our pre-process took about a year. Not only did we go through legal and information technology security issues, we conducted a complete analysis of what we wanted to look at and where you are starting,” she says. <br><br></div> <div>“You can learn a great deal by doing what I call ‘shadow visits’—walking around, observing what is happening, what staff are doing, what types of dressing they’re using, and how they’re applying them,” Easton-Garrett adds. “You really have to do your due diligence. You have to narrow down the scope of what you want to accomplish—at least initially—then partner and conduct pilots. You need to be realistic about the resources you have, who will be using the technology, and how.”<br><br></div> <div>The true success of any type of technology program, she says, “is the planning and effective introduction of the processes with staff and residents.”<br><br></div> <div>Handler agrees that planning is essential. “We believe that to get consistent results, you have to go in and assess the facility and its infrastructure and supports, match it to the technology, and implement and test it.” This assessment and testing can help identify important gaps.<br><br></div> <div>For instance, he says, “Some facilities say that they have robust Wi-Fi, but some facilities may have dead zones or insufficient bandwidth to support telemedicine consultations. Once you identify these issues, you can fix them before you get started.”</div> <h2 class="ms-rteElement-H2">Delivering Diabetes Care</h2> <div>Chronic disease management is a key use for telemedicine, and Ryan Kelly, executive director of the Mississippi Rural Health Association, gives a powerful example of how this can work. Diabetes telemedicine was piloted in one of the poorest, least-educated counties in the country. Through the program, physicians consult with nurse practitioners who are monitoring patients, taking blood sugars, making sure patients are eating right and complying with their medications, and so on. <br><br></div> <div>“Nearly all patients saw remarkable reductions in A1C levels; many aren’t even on insulin anymore,” Kelly says. “The ability to monitor these patients on a daily basis is key, and particularly in rural areas, telemedicine is the best—sometimes the only—way to do this.” He adds, “We now have a chronic disease management billing code that can be used” to cover diabetes telemedicine costs.<br><br></div> <div>Moving forward, Kelly suggests, expect to see more telemedicine programs involving diabetes management, as well as telepsychiatry. He urges facilities across the continuum to get on board. “The worst thing you can do is to get the equipment and not use it. You need to train people and have protocols for its use.” There are barriers, he admits, but says that they aren’t insurmountable. </div> <h2 class="ms-rteElement-H2">Stroke Patients Could Benefit</h2> <div>Neurology consults are another promising use for telemedicine. Amber Humphrey, assistant director of Vanderbilt Telemedicine at Vanderbilt University Medical Center, talks about her organization’s use of hand-held video conferencing with neurologists via iPad.<br><br></div> <div>“When a patient has a stroke or neurological issue at a partner hospital and a neurologist isn’t available on-site, having something mobile and easy to use—a device that everyone is familiar with and can grab and use—is critical,” she says.<br><br></div> <div>“We’ve had good results with this. Overall patient response to talking to the physician via iPad is positive. The immediate access to the neurologist makes them feel more comfortable,” she says.<br><br></div> <div><img width="235" height="214" class="ms-rtePosition-1" src="/Issues/2016/June/PublishingImages/coverstory2.jpg" alt="" style="margin:5px 15px;" />Vanderbilt uses a Health Insurance Portability and Accountability Act (HIPAA)-compliant, cloud-based platform. The partner hospital uploads information that physicians get in minutes and can review before they are connected with a patient.<br><br></div> <div>“Our goal isn’t to triage patients [to get them admitted to our hospital], but to keep them in the community at the most appropriate level of care,” Humphrey says. “Using this technology, we’ve found that our partner facilities can retain 85 percent of the patients.”<br><br></div> <div>The University of Pittsburgh Medical Center has a robust telemedicine program that started with a problem and the desire for a solution.<br><br></div> <div>“The chair of UPMC’s Department of Neurology, Dr. Lawrence Wechsler, was a stroke specialist, and he recognized that community hospitals often couldn’t treat stroke patients, which resulted in patients being transported to urban facilities, thus delaying treatment and resulting in progressive neurological damage,” Sokolovich says. “He believed that if patients could be treated sooner, their clinical outcomes would be better.”<br><br></div> <div>Enter, telemedicine. The program has been so successful that UPMC has expanded its telemedicine efforts far beyond stroke. For example, Sokolovich says, “Our behavioral health leadership recognized the shortage and lack of access to behavioral health and began our telepsychiatry program. From there, we had additional physician specialists who saw opportunities to use telemedicine for things such as virtual rounding at community hospitals for post-surgical follow-up.”<br><span id="__publishingReusableFragment"></span></div> <h2 class="ms-rteElement-H2">Reimbursement Challenges</h2> <div>Even though telemedicine increasingly is shown to have clinical value and cost-effectiveness, reimbursement still remains somewhat elusive. Traditionally, reimbursement for telemedicine in long term care was only eligible for use in rural settings. Handler says, “Physicians may be reimbursed for some subsequent care services in nursing homes. Specifically, CPT E&M codes 99307-99310 can be used with limitations of one telemedicine visit every 30 days per resident in a rural/nonmetropolitan area,” he says. <br><br></div> <div>Telemedicine also may be reimbursable if used as part of certain ACOs, or other alternative payment models such as the Comprehensive Care for Joint Replacements bundled payment program.<br><br></div> <div>Phase 2 of the CMS Innovation Awards includes funding up to $1 billion in awards to organizations that are implementing the most compelling new ideas to deliver better health, improved care, and lower costs to people enrolled in Medicare, Medicaid, and the Children’s Health Insurance Program. It allows participating facilities, regardless of their location, to use telemedicine to diagnose the qualifying conditions for keeping residents in the skilled nursing care center for an additional $218 per patient day.<br><br></div> <div>“This is an incentive to the facility to keep residents in the facility and not send them to the hospital, and it eliminates the three-day qualifying hospital stay,” says Handler.<br><br></div> <div>Skilled nursing centers that are involved in Phase 2 of the CMS Innovation Awards may receive money for managing a limited set of qualifying conditions in the care center instead of the hospital. Phase 2 allows for the use of telemedicine in addition to in-person visits to confirm the presence of a qualifying medical condition.<br><br></div> <div>“On the private insurance side, they’re more embracing of telehealth, so there might be some reimbursement opportunities there,” says Easton-Garrett.</div> <h2 class="ms-rteElement-H2">Energizing Elders And Their Loved Ones</h2> <div>No matter how much planning goes into telemedicine programs or how much is invested in the technology, it won’t be effective if patients aren’t energized and engaged. <br><br></div> <div>To get elders involved, according to Easton-Garrett, “you need technology that is easy to understand and use. Make sure that the contrast of the screen is appropriate for aging eyes; have the ability to change the font size. Some items may need Braille or voice prompts.”<br><br></div> <div>To help residents embrace telemedicine, she suggests having focus groups and involving resident leaders in the community. Take the intimidation out of the technology.<br><br></div> <div>“Have someone who can introduce it in a way they will understand. Be prepared to address their objections. For example, if they say that they’re too old to learn something new, remind them about what changes they’ve been able to manage. Make them feel empowered.”<br><br></div> <div>Part of the reason the wound care telemedicine program works, says Easton-Garrett, is that the screen is at “conversational height” for people who are seated or in wheelchairs. Because they are comfortable and can easily engage and make eye contact with the nurse, they respond and interact easily.<br><br></div> <div>Easton-Garrett and her team also worked to build excitement about the telemedicine program. “We had posters at the nurses’ stations and in the hallways—‘VGo [the name of the telemedine technology] Is Coming.’” And they asked for suggestions on names for the robot.” </div> <h2 class="ms-rteElement-H2">Converting Clinicians</h2> <div>As Handler’s survey suggests, practitioners generally are on board with telemedicine. However, he warns that there is bound to be some resistance for those who see this as just one more burden or responsibility.</div> <div>“You have to create a telemedicine software interface for physicians and nurses that allows them to integrate this new clinical work flow and exceeds their current solution of using phones when providers aren’t available to see residents in person,” he says.<br><br></div> <div><img width="253" height="232" src="/Issues/2016/June/PublishingImages/coverstory.gif" class="ms-rtePosition-1" alt="" style="margin:10px 15px;" />“We have learned that certain technologies are particularly important, such as high-quality audio, video, and an electronic stethoscope that is as good as listening to the heart, lungs, and abdomen as if you were in the same room as the resident. If you provide this functionality and demonstrate it for them, they will understand the value of telemedicine.” <br><br></div> <div>Having a physician leader who also is a telemedicine champion also can make a difference, says Humphrey. “We have a neurologic telemedicine medical director, and he works on building partnerships with his colleagues in the field. It’s good to have physician leadership on board who are comfortable with telemedicine; they then socialize among their peers and get them to try it.”<br><br></div> <div>“You can’t ask people to do something for nothing,” says Sokolovich. “For example, if you’re still reimbursing physicians on a fee-for-service basis, this needs to be included in their contract. You need to integrate telemedicine as something they get credit for and enables them to achieve the minimum standards required of them.” She adds, “As you build momentum with clinicians, it becomes viral and exciting. And before you know it, more people want to leverage the technology.”</div> <h2 class="ms-rteElement-H2">Next Stop: Value-Based Care</h2> <div>Leveraged effectively, telemedicine “absolutely will make you a more desired player in the new world of health care,” says Easton-Garrett. However, she cautions, “It’s never just about the technology. You need to make it high-touch as well as high-tech. It’s about the ability to provide a higher level of clinical resources and services to support acuity and provide quality, cost-effective population health management.” That, she says, is what ACOs and hospitals will be seeking in their partners.<br><br></div> <div>Sokolovich agrees. “CMS is toward more to bundled payments and looking at outcomes. Facilities and organizations that successfully leverage technology will be rewarded and will thrive.” At the same time, she predicts that consumers increasingly will expect this technology.<br><br></div> <div>“It’s a competitive marketplace, and as consumers have more skin in the game with out-of-pocket expenses, they will shop for health care as they do for other products. Facilities that have innovative programs such as telemedicine are more likely to be attractive.”</div> <h2 class="ms-rteElement-H2">Tell A Friend: Telemedicine Is Here To Stay</h2> <div>“This type of technology is compelling. It shouldn’t and can’t replace hands-on care. However, it can be useful when a practitioner can’t get to the facility or when the resident has an acute change of condition, and it’s viable to avoid a hospital transfer,” says Handler.<br><br></div> <div>Implementing telemedicine may not be easy, but it doesn’t have to be hard. “Facilities have implemented EHRs and other changes. They can do this,” says Sokolovich. “Waiting around won’t make it go away. The train has left the station, and it’s moving rapidly. Get on board, or you will be left behind.”</div> <div> </div> <div><em>Joanne Kaldy is a freelance writer and communications consultant based in Harrisburg, Pa.</em></div> <br>

This may sound futuristic and more fantastic than functional, but telemedicine is coming front and center in efforts to streamline costs, reduce transfers and avoidable hospitalizations, and enable experts to care for patients across town and around the country.

2016-06-01T04:00:00Z

Technology

Arthritis: Listening Leads To Enhanced Outcomes	https://www.providermagazine.com/Issues/2016/June/Pages/Arthritis-Listening-Leads-To-Enhanced-Outcomes.aspx	Arthritis: Listening Leads To Enhanced Outcomes	<div>As the U.S. population ages, health providers and administrators in assisted living, skilled nursing, and post-acute care centers will need actionable strategies in place to manage the pain, stiffness, and limitations of activity caused by arthritis. Beyond addressing individual patient needs, the living environments of these patients and their ability to access mobility aids and <a target="_blank" href="/archives/2016_Archives/Pages/0616/Overview-Of-Arthritis-Treatments.aspx">treatments</a> will be a high priority. </div> <h2 class="ms-rteElement-H2">Just The Facts</h2> <div>There are more than 100 different kinds of arthritis, ranging from osteoarthritis (OA) caused by joint damage or wear and tear, to autoimmune forms, such as rheumatoid arthritis (RA), that are often diagnosed in young adults and require lifelong commitment to treatment and management. <br><br></div> <div>The U.S. Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) estimate that nearly a quarter of all adults, 52.5 million, have self-reported doctor-diagnosed arthritis, and, of those, 22.7 million have arthritis and arthritis-attributable activity limitations.<br><br></div> <div>It’s very common for people living with arthritis to also have multiple comorbidities, such as heart disease, chronic respiratory condition, depression, or diabetes.<br><br></div> <div>In the nursing care or assisted living setting, arthritis is more common in women, but prevalence increases in both women and men as the patient ages.<br><br></div> <div>As patients get older, it’s expected that arthritis will increasingly cause disability and compromise quality of life as patients require more assistance with the tasks of everyday living, such as bathing, dressing, and getting in or out of bed, according to the Population Reference Bureau.<br><br></div> <div>The central question that health care providers need to ask of themselves is how to best understand and address the needs of this growing patient population.</div> <h2 class="ms-rteElement-H2">Listen First, Treat Second</h2> <div>Patient voices need to be heard. Physicians need to elicit information about domains important to them, such as sleep, pain, fatigue, and tolerance to medication. To this end, accumulating Patient Reported Outcomes (PRO) from the individual and the patient community are at the center of arthritis management strategies.<br><br></div> <div>In RA, particularly, assessing and collecting PRO data is integral and a common practice. The NIH Patient Reported Outcomes Measurement Information System has developed generic health measures across a range of symptoms that potentially affect the RA patient that can now be used to assess responsiveness and clinically meaningful cutoffs for treatment and management strategies. Various tools can be reviewed and selected at <a target="_blank" href="http://www.nihpromis.org/?AspxAutoDetectCookieSupport=1#2">www.nihpromis.org</a>.</div> <h2 class="ms-rteElement-H2">PRO Influence Growing</h2> <div>Widely available and in use, PRO measures provide important perspectives not evident in clinical, lab-based data, and they have the potential of better informing treatment decisions in clinical practice.<br><br></div> <div><img src="/Issues/2016/June/PublishingImages/caregiving.gif" class="ms-rteImage-0 ms-rtePosition-1" alt="" style="margin:5px 20px;" />According to a physician survey presented at the American College of Rheumatology 2014 annual meeting, the use of data in rheumatology visits is going up, and rheumatologists seem to prefer measures where patients are delivering the most information.<br><br></div> <div>According to CDC, the most commonly used PRO measures in RA are:</div> <div><ul><li>Health Assessment Questionnaire—Disability Index (HAQ-DI), a 41-item questionnaire (20 items for daily activities, 13 for assistive devices, eight for assistance from others). </li></ul></div> <div><ul><li>Routine Assessment of Patient Index Data 3 (RAPID3). As explained by Orbai and Bingham, RAPID3 is a composite disease activity index consisting of the three PROs included in the ACR Core Set: disability, pain, and patient global assessment of disease activity. Disability is measured using the multidimensional HAQ (MD-HAQ), a 10-item questionnaire that adds two items, “over the last week were you able to walk two miles or three kilometers” and “participate in recreational activities and sports as you would like,” to the eight-item Modified Health Assessment Questionnaire. Notably, Golightly et al. recommend a tiered PRO approach for the management of OA. For example, the WOMAC (Western Ontario and McMaster Universities Arthritis Index) is commonly used to evaluate pain, stiffness, and physical function in knee and hip arthritis.</li></ul></div> <h2 class="ms-rteElement-H2">Treating The Whole Patient</h2> <div>While radiographic results and clinical lab work represent the gold standard for assessing disease activity in clinics, PRO measures are vital to understanding a patient’s experience. Listening to the patients’ responses to treatment is paramount. Medications across different classes are associated with rare, but serious, adverse events, and patients’ anxiety and overall tolerance of a medication affect their ability to maintain and benefit from treatment. Treatment adherence may be further compromised because certain medicines require additional steps, like self-administered injection or infusion in a hospital or infusion center. <br><br></div> <div>Arthritis patients, whether autoimmune or OA, also deal with complex body image issues and may develop anxiety or depression about their condition. Researchers have found that:</div> <div><ul><li>In OA, structural changes impact a patient’s mobility and ability to participate in activities they enjoy, which can result in a feeling of loss.</li></ul></div> <div><ul><li>In OA and RA, patients may feel self-conscious about changes in their body caused by the disease and the treatment, for example, by weight gain caused by steroids or changes in libido.</li></ul></div> <div><ul><li>Relationships are impacted as the disease seemingly takes over other aspects of life, for example, the ability to work, exercise, or participate in other hobbies.</li></ul></div> <div>Health providers can help arthritis patients overcome real and perceived barriers to treatment by encouraging patients to be active partners in their own care. Beyond discussing personal treatment strategies, health providers can educate their patients about CDC-recommended arthritis intervention and physical activity programs (<a target="_blank" href="http://www.cdc.gov/arthritis/interventions/index.htm">www.cdc.gov/arthritis/interventions/index.htm</a>). Administrators might also review these programs to determine which could be adapted by their center to offer their local patient population access to education, joint-friendly physical activity, and support. The American College of Rheumatology also recommends early intervention for best treatment outcomes.</div> <h2 class="ms-rteElement-H2">External Forces Impact Ability To Provide Quality Care</h2> <div>Unfortunately, the business of medicine impacts patient care, specifically the high cost of specialty medications for the autoimmune arthritis patient. In the assisted living and nursing care center environment, the cost of the medications and a patient’s ability to access them, if they need to be infused elsewhere, may also impact care. Payers who require a specific clinical pathway treatment program also directly inhibit a provider’s freedom to treat a patient independent of all financial restrictions, as well. <br><br></div> <div>On the professional side, rheumatologists very likely are not the primary specialist seen by arthritis patients in the long term care setting. Rather, internists or geriatricians may be the first-line physician, but there is a severe shortage of such specialists in the United States, according to a recent report. It would be worthwhile for institutions serving older adults to encourage health professionals to seek arthritis continued medical education opportunities in order to remain engaged in best practices. <br><br></div> <div>Recall that older adults with arthritis may also have one or more comorbid conditions and be seeing several physicians, which is why a team-based, patient-centered approach to understanding how treatment and management strategies impact individual patients is so important. The team needs to keep the lines of communication open. </div> <h2 class="ms-rteElement-H2">Aging And Arthritis</h2> <div>As the baby boomer population ages, more and more patients in the extended care center setting will be impacted by arthritis. Patient-centered care relies on hearing the patient’s concerns about treatment and its impact on their quality of life in order to adjust treatment accordingly. That’s why physicians and nurses need to be active listeners and engaged conversationalists to motivate arthritis patients to be compliant with treatment and report their response to treatment to impact outcomes, particularly since arthritis is a chronic disease for which there is no cure. For example, some patients might benefit from a biologic, but if they cannot tolerate it or afford it, then a course correction will be needed.<br><br></div> <div><img class="ms-rtePosition-1" alt="Jonathan Krant, MD" src="/Issues/2016/June/PublishingImages/JonathanKrant.jpg" style="margin:5px 15px;" />Patients can and should take equal responsibility for complying with treatment recommendations, including taking prescribed medications and incorporating everyday management strategies into their day-to-day routine. Encourage arthritis patients to be equal partners in their care by tracking the symptoms and treatment via <a href="/archives/2016_Archives/Pages/0616/How-Can-Residents-Get-Involved.aspx" target="_blank">ArthritisPower</a> or reaching out for support available locally or online such as via the online support group CreakyJoints. When physicians and patients work together to treat the body and the mind, there are greater opportunities to live well. </div> <div> </div> <div><em>Jonathan Krant, MD, is medical director of CreakyJoints and section chief of rheumatology at Adirondack Health Systems, Saranac Lake, N.Y.</em></div>	As the U.S. population ages, health providers and administrators in assisted living, skilled nursing, and post-acute care centers will need actionable strategies in place to manage the pain, stiffness, and limitations of activity caused by arthritis.	2016-06-01T04:00:00Z	<img alt="" src="/Issues/2016/June/PublishingImages/caregiving_T.jpg" style="BORDER:0px solid;" />	Caregiving;Clinical	Special Feature
Reenergizing Research While Improving Patient Care	https://www.providermagazine.com/Issues/2016/June/Pages/Reenergizing-Research-While-Improving-Patient-Care.aspx	Reenergizing Research While Improving Patient Care	<div> </div> <div> </div> <p class="ms-rteElement-P"><img class="ms-rtePosition-1" alt="W. Benjamin Nowell" src="/Issues/2016/June/PublishingImages/BenjaminNowell.jpg" style="margin:10px;" />It’s an exciting time to be involved in research because there is now the opportunity to combine traditional clinical effectiveness research with patient-centered outcomes research (PCOR).</p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P">PCOR includes measures important to patients and caregivers such as quality of life, disease symptoms, and safety and engages patients throughout the research process by weighing in on study objectives, design, conduct, implementation, and dissemination. PCOR encourages other stakeholders such as physicians, payers, and policymakers to understand what is important to patients and address responsive research questions. Essentially, PCOR helps bridge the communication gap between health care payers, systems, and providers with patients or residents and caregivers. <br></p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P">PCOR also speeds the dissemination of research findings back to patients and other stakeholders who use the most current information in health care decisions. </p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P">And residents of long term care facilities can participate as well. (<em>For more information, see </em><a href="/archives/2016_Archives/Pages/0616/How-Can-Residents-Get-Involved.aspx" target="_blank"><em>“How Can Residents Get Involved?”</em></a>)</p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P">For rheumatologic conditions, PCOR has the potential to make a tremendous impact. Whereas treatment decision making for many rheumatologic conditions has traditionally depended primarily on x-rays, lab tests, and clinical assessment of relevance to clinicians, PCOR enables researchers to learn how treatments affect patients’ ability to manage symptoms and maintain their quality of life outside of the clinic. <br></p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P">PCOR brings both perspectives together, identifying optimal approaches to manage and study chronic diseases, particularly complex conditions such as rheumatoid arthritis, vasculitis, or pediatric rheumatic disease. </p> <div> </div> <h2 class="ms-rteElement-H2">The PCORI Mandate</h2> <div> </div> <div>Ensuring that stakeholders—who are defined as the actual users of research results—are engaged in the Patient-Centered Outcomes Research Institute (PCORI) research is mandatory. PCORnet provides a formal channel for researchers to approach patient communities as partners as well as participants in eventual studies and analysis. Each Patient Powered Research Network (PPRN) functions as a registry or secured repository of patient-reported data and observational electronic health information.<br></div> <div> </div> <div><br>Most of the PPRNs grew out of existing patient communities, and most will have online (Web) and/or smartphone-based portals that allow patients the ability to access research opportunities directly rather than relying on physician solicitation for participation. This is one example of how PCORI aims to engage and empower patients in health research.</div> <div> </div> <div> </div> <h2 class="ms-rteElement-H2">The Arthritis Networks</h2> <div> </div> <div><img class="ms-rtePosition-2" alt="Jeffrey Curtis" src="/Issues/2016/June/PublishingImages/JeffreyCurtis.jpg" style="margin:5px 15px;" />One of the PPRNs, called ArthritisPower, focuses on rheumatoid arthritis, spondyloarthritis, and other rheumatologic and skin conditions (such as psoriasis). It was created and is managed by the nonprofit arthritis patient advocacy group CreakyJoints in partnership with the University of Alabama at Birmingham.<br><br></div> <div> </div> <div>Within ArthritisPower, a Patient Governor Group (essentially a patient steering committee) combs through research requests coming in from patients and researchers wanting to partner with the patient community, and then helps prioritize which questions will be developed into studies. Participating patients choose which studies to participate in and enter their health care data via a mobile- and computer-based application that runs on iPhones, Android devices, or in a browser on desktop PCs.<br><br></div> <div> </div> <div>Data collected relate to sleep, pain, fatigue, and more, although individual studies can be designed to elicit other types of longitudinal data. Study results will be reported directly to participants inside the application (and shared peer-to-peer via presentations and publications), thus closing the loop from inception to completion and dissemination.<br><br></div> <div> </div> <div>Besides ArthritisPower, two other PPRNs focus on rheumatologic conditions. The Vasculitis PPRN focuses on all forms of vasculitis and is a partnership between the Vasculitis Clinical Research Consortium (investigators) and the Vasculitis Foundation (patients).<br><br></div> <div> </div> <div>The Patients, Advocates, and Rheumatology Teams Partner for Research and Service (PARTNERS) PPRN is a collaboration between disease-specific advocacy groups (Arthritis Foundation, Cure JM Foundation, Lupus Foundation of America), a quality improvement network (PR-COIN—Pediatric Rheumatology Care & Outcomes Improvement Network), and a research network (CARRA—Childhood Arthritis and Rheumatology Research Alliance).<br><br></div> <div> </div> <div>Each of these patient networks is eager to partner with clinical researchers to support new projects and initiatives using the infrastructure that has been newly established.</div> <div> </div> <h2 class="ms-rteElement-H2">Patient-Centered Priorities In Rheumatology</h2> <div> </div> <div>Traditional health research has brought remarkable advances in treating rheumatic diseases in children and adults, yet there are limitations.<br><br></div> <div> </div> <div><img class="ms-rtePosition-2" alt="Peter Merkel, MD" src="/Issues/2016/June/PublishingImages/PeterMerkel.jpg" style="margin:5px 10px;" />For example, research subjects in many studies, such as Phase III clinical trials, don’t necessarily reflect “real world” patients who often have comorbidities that exclude them from the studies. Yet these unrepresented patient communities raise important clinical management questions that need to be answered in order for clinicians to deliver the best possible care.<br><br></div> <div> </div> <div>Patient-centered research is already underway in the arthritis/rheumatology community. For example, one of the challenges of caring for a patient with arthritis is the large number of treatment options available. Some patients may only be candidates for certain therapies, others are highly sensitive to cost, and still others may prefer pills versus injections.<br><br></div> <div> </div> <div>Liana Fraenkel, MD, of Yale University will soon conduct a large study of patients with the ArthritisPower network to help identify patient characteristics, or “phenotypes,” that can aid physicians in working with patients to choose the best treatment option given patients’ individual preferences.</div> <div> </div> <h2 class="ms-rteElement-H2">Questions To Answer</h2> <div> </div> <div>There are many questions that PCOR research in the rheumatology community could answer, such as:</div> <div> </div> <div>■ How do clinical and patient-reported outcomes compare across different medical treatments for rheumatoid arthritis? And how does the presence of certain comorbidities affect both the choice of treatments and their outcomes?</div> <div> </div> <div>■ How does the availability of forthcoming biosimilar medications affect patient treatment selection? What are the patient and/or provider motivations for making a medication switch?</div> <div> </div> <div>■ How do side effects or less serious but nevertheless bothersome symptoms such as nausea impact medication adherence?</div> <div> </div> <div>■ What is the relative safety and effectiveness of different biologic medications across both directly and indirectly related health domains (such as sleep, fatigue, depression)?<br><br></div> <div> </div> <div>Indeed, now that PCORnet is in its second year, groundbreaking research that crosses multiple conditions is in the pipeline. Glucocorticoids, newer and traditional synthetic DMARDs, and biologic medications are used to treat a range of rheumatologic and other conditions.<br><br></div> <div> </div> <div>Studies that span multiple PPRNs are being proposed to study the comparative safety and effectiveness of these and other medications currently available and those to come, as well as to revisit the safety of older medications that may have deleterious effects in the long term, such as glucocorticoids. </div> <div> </div> <div> </div> <h2 class="ms-rteElement-H2">Physicians Build Confidence</h2> <div> </div> <div>Physicians and other health care providers have reason to be excited about PCORnet and, in particular, about PPRNs like ArthritisPower, the V-PPRN, and PARTNERS, and to encourage their patients to actively participate in patient-centered research. The longitudinal data reported by patients can support understanding of their own health while pushing research forward for everyone.<br><br></div> <div> </div> <div>Within the ArthritisPower application designed to capture registry data, patients can track their own symptoms and generate personal reports to share with a physician. Functionality such as this can help patients and doctors work together to choose the best treatment options.<br><br></div> <div> </div> <div>The new patient-centered research paradigm relies on robust patient engagement. Rheumatologists, rheumatology researchers, and patient advocacy organizations—like CreakyJoints, the Vasculitis Foundation, the Arthritis Foundation, Lupus Foundation of America, and Cure JM Foundation—are making this a reality. <br></div> <div> </div> <div> </div> <div> </div> <div><em><img class="ms-rtePosition-1" alt="Laura Schanberg, MD" src="/Issues/2016/June/PublishingImages/LauraSchanberg.jpg" style="margin:5px 15px;" />W. Benjamin Nowell, PhD, LMSW, is director, patient-centered research, of Global Healthy Living Foundation/CreakyJoints, and co-principal investigator for ArthritisPower. Peter A. Merkel, MD, MPH, is chief, Division of Rheumatology, and professor of medicine and epidemiology at the University of Pennsylvania and co-principal investigator of the Vasculitis Patient-Powered Research Network. Laura E. Schanberg, MD, is professor of pediatrics and co-chief, Division of Pediatric Rheumatology, at Duke University School of Medicine and principal investigator of PARTNERS PPRN. Jeffrey R. Curtis, MD, MS, MPH, is the William J. Koopman Endowed Professor in Rheumatology and Immunology at the University of Alabama at Birmingham, Division of Clinical Immunology and Rheumatology, and co-principal investigator for ArthritisPower.</em></div>	It’s an exciting time to be involved in research because there is now the opportunity to combine traditional clinical effectiveness research with patient-centered outcomes research.	2016-06-01T04:00:00Z	<img alt="" src="/Issues/2016/June/PublishingImages/arthritis_t.jpg" style="BORDER:0px solid;" />	Caregiving;Clinical	Special Feature
2016 Top 50 Largest Nursing Facility Companies	https://www.providermagazine.com/Issues/2016/June/Pages/2016-Top-50-Largest-Nursing-Facility-Companies.aspx	2016 Top 50 Largest Nursing Facility Companies	<p>Click to view the <a href="/reports/Documents/2016/0616_Top50.pdf" target="_blank"><img class="ms-asset-icon ms-rtePosition-4" src="/_layouts/images/pdficon_small.gif" alt="" />2016 Top 50 Nursing Facility Companies</a>.</p> Please contact <a href="mailto:jerickson@providermagazine.com">Joanne Erickson</a> to be included on the next list.	Click through to find out who made the list.	2016-06-01T04:00:00Z	<img alt="" src="/Issues/2016/June/PublishingImages/Top50_2016.gif" style="BORDER:0px solid;" />	Caregiving;Management	Column
2016 Top 40 Largest Assisted Living Facilities	https://www.providermagazine.com/Issues/2016/June/Pages/2016-Top-40-Largest-Assisted-Living-Facilities.aspx	2016 Top 40 Largest Assisted Living Facilities	<p>Click to view the <a target="_blank" href="/reports/Documents/2016/0616_Top40.pdf"><img src="/_layouts/images/pdficon_small.gif" class="ms-asset-icon ms-rtePosition-4" alt="" />Top 40 Largest Assisted Living Facilities</a>.</p> Please contact <a href="mailto:jerickson@providermagazine.com">Joanne Erickson</a> to be included on the next list.	Click through to see who made the list.	2016-06-01T04:00:00Z	<img alt="" src="/Issues/2016/June/PublishingImages/Top40_2016.gif" style="BORDER:0px solid;" />	Management;Caregiving	Column
Long Term Care Quality At Issue Around The World	https://www.providermagazine.com/Issues/2016/June/Pages/Long-Term-Care-Quality-At-Issue-Around-The-World.aspx	Long Term Care Quality At Issue Around The World	<br>It’s easy to think that the problems we face in providing high-quality care to frail elders is a challenge that is unique to health care in the United States. We are not alone. You only have to look across our border to the province of Ontario, Canada, to see evidence that ensuring quality is a universal challenge. <br><br>While the Canadian health care system is very different from that in the U.S., we share many challenges when it comes to eldercare. In fact, on July 1, 2010, the Ontario Ministry of Health (MOH) implemented the Long-Term Care Homes Act, 2007. The act reads much like a modern-day version of the Omnibus Budget Reconciliation Act of 1987.<br><br>MOH (like the Centers for Medicare & Medicaid Services) was charged with developing a regulatory approach to transform long-term care along the lines of what residents and families and other stakeholders recommended. They identified the Quality Indicator Survey (QIS) as a possible evolution to a more structured and resident-centered “inspection” (their term for survey) of their skilled nursing care centers.<br><br>A contract for developing content, Web-based technology to conduct inspections throughout the 630 nursing centers in the province, training for inspectors, and continued refinement was put out for bid. <br><br>Through that contract, I was fortunate enough to be able to participate in the development of the methodology and the Web application, and I have greatly enjoyed an ongoing working relationship with the ministry staff and long term care providers in Ontario.<br><br>The universality of quality constructs was apparent from early development of the questions that would provide the basis for Stage 1. The wording in the Act is certainly different, but the question sets for resident, family, and staff interview, as well as observation and chart review, overlapped more than 90 percent with QIS. The new inspection process was dubbed the Resident Quality Inspection (RQI).<br><br>The Ontario Auditor General (akin to the General Accountability Office) reviewed the RQI recently. The agency observed, “In early 2011, the ministry implemented comprehensive inspections, which aim to assess residents’ satisfaction and homes’ compliance with legislative requirements. On average, a comprehensive inspection involves three or four inspectors examining the home over an eight-day period. This inspection process has two stages and 31 inspection protocols, five of which are mandatory protocols.”<br><br>Sound familiar? Of course, eight days is even longer than the U.S. annual survey. So what did AG suggest?<br>“To put the safety of residents first by focusing on high-risk areas, the Ministry of Health and Long-Term Care should…prioritize comprehensive inspections based on long term care homes’ complaints and critical incidents, compliance history, and other risk factors.”<br><br>And what was the MOH response?<br><br>“The ministry is evaluating options to consider a focused, comprehensive inspection which would be shorter and less resource-intensive for homes that are substantially compliant and [at] lower risk.”<br><br>MOH already has a risk stratification methodology for its nursing centers. A proposed annual “focused inspection” methodology for all low-risk centers that maintain the integrity of the original process is now being developed.<br><br><em>Andy Kramer, MD, is a long term care researcher and professor of medicine who was instrumental in the design and development of the Quality Indicator Survey.</em><br>	While the Canadian health care system is very different from that in the U.S., we share many challenges when it comes to eldercare.	2016-06-01T04:00:00Z	<img alt="" src="/Issues/2016/PublishingImages/AndyKramer_2015.jpg" style="BORDER:0px solid;" />	Quality	Column

Arthritis: Listening Leads To Enhanced Outcomes	https://www.providermagazine.com/Issues/2016/June/Pages/Arthritis-Listening-Leads-To-Enhanced-Outcomes.aspx	Arthritis: Listening Leads To Enhanced Outcomes	<div>As the U.S. population ages, health providers and administrators in assisted living, skilled nursing, and post-acute care centers will need actionable strategies in place to manage the pain, stiffness, and limitations of activity caused by arthritis. Beyond addressing individual patient needs, the living environments of these patients and their ability to access mobility aids and <a target="_blank" href="/archives/2016_Archives/Pages/0616/Overview-Of-Arthritis-Treatments.aspx">treatments</a> will be a high priority. </div> <h2 class="ms-rteElement-H2">Just The Facts</h2> <div>There are more than 100 different kinds of arthritis, ranging from osteoarthritis (OA) caused by joint damage or wear and tear, to autoimmune forms, such as rheumatoid arthritis (RA), that are often diagnosed in young adults and require lifelong commitment to treatment and management. <br><br></div> <div>The U.S. Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) estimate that nearly a quarter of all adults, 52.5 million, have self-reported doctor-diagnosed arthritis, and, of those, 22.7 million have arthritis and arthritis-attributable activity limitations.<br><br></div> <div>It’s very common for people living with arthritis to also have multiple comorbidities, such as heart disease, chronic respiratory condition, depression, or diabetes.<br><br></div> <div>In the nursing care or assisted living setting, arthritis is more common in women, but prevalence increases in both women and men as the patient ages.<br><br></div> <div>As patients get older, it’s expected that arthritis will increasingly cause disability and compromise quality of life as patients require more assistance with the tasks of everyday living, such as bathing, dressing, and getting in or out of bed, according to the Population Reference Bureau.<br><br></div> <div>The central question that health care providers need to ask of themselves is how to best understand and address the needs of this growing patient population.</div> <h2 class="ms-rteElement-H2">Listen First, Treat Second</h2> <div>Patient voices need to be heard. Physicians need to elicit information about domains important to them, such as sleep, pain, fatigue, and tolerance to medication. To this end, accumulating Patient Reported Outcomes (PRO) from the individual and the patient community are at the center of arthritis management strategies.<br><br></div> <div>In RA, particularly, assessing and collecting PRO data is integral and a common practice. The NIH Patient Reported Outcomes Measurement Information System has developed generic health measures across a range of symptoms that potentially affect the RA patient that can now be used to assess responsiveness and clinically meaningful cutoffs for treatment and management strategies. Various tools can be reviewed and selected at <a target="_blank" href="http://www.nihpromis.org/?AspxAutoDetectCookieSupport=1#2">www.nihpromis.org</a>.</div> <h2 class="ms-rteElement-H2">PRO Influence Growing</h2> <div>Widely available and in use, PRO measures provide important perspectives not evident in clinical, lab-based data, and they have the potential of better informing treatment decisions in clinical practice.<br><br></div> <div><img src="/Issues/2016/June/PublishingImages/caregiving.gif" class="ms-rteImage-0 ms-rtePosition-1" alt="" style="margin:5px 20px;" />According to a physician survey presented at the American College of Rheumatology 2014 annual meeting, the use of data in rheumatology visits is going up, and rheumatologists seem to prefer measures where patients are delivering the most information.<br><br></div> <div>According to CDC, the most commonly used PRO measures in RA are:</div> <div><ul><li>Health Assessment Questionnaire—Disability Index (HAQ-DI), a 41-item questionnaire (20 items for daily activities, 13 for assistive devices, eight for assistance from others). </li></ul></div> <div><ul><li>Routine Assessment of Patient Index Data 3 (RAPID3). As explained by Orbai and Bingham, RAPID3 is a composite disease activity index consisting of the three PROs included in the ACR Core Set: disability, pain, and patient global assessment of disease activity. Disability is measured using the multidimensional HAQ (MD-HAQ), a 10-item questionnaire that adds two items, “over the last week were you able to walk two miles or three kilometers” and “participate in recreational activities and sports as you would like,” to the eight-item Modified Health Assessment Questionnaire. Notably, Golightly et al. recommend a tiered PRO approach for the management of OA. For example, the WOMAC (Western Ontario and McMaster Universities Arthritis Index) is commonly used to evaluate pain, stiffness, and physical function in knee and hip arthritis.</li></ul></div> <h2 class="ms-rteElement-H2">Treating The Whole Patient</h2> <div>While radiographic results and clinical lab work represent the gold standard for assessing disease activity in clinics, PRO measures are vital to understanding a patient’s experience. Listening to the patients’ responses to treatment is paramount. Medications across different classes are associated with rare, but serious, adverse events, and patients’ anxiety and overall tolerance of a medication affect their ability to maintain and benefit from treatment. Treatment adherence may be further compromised because certain medicines require additional steps, like self-administered injection or infusion in a hospital or infusion center. <br><br></div> <div>Arthritis patients, whether autoimmune or OA, also deal with complex body image issues and may develop anxiety or depression about their condition. Researchers have found that:</div> <div><ul><li>In OA, structural changes impact a patient’s mobility and ability to participate in activities they enjoy, which can result in a feeling of loss.</li></ul></div> <div><ul><li>In OA and RA, patients may feel self-conscious about changes in their body caused by the disease and the treatment, for example, by weight gain caused by steroids or changes in libido.</li></ul></div> <div><ul><li>Relationships are impacted as the disease seemingly takes over other aspects of life, for example, the ability to work, exercise, or participate in other hobbies.</li></ul></div> <div>Health providers can help arthritis patients overcome real and perceived barriers to treatment by encouraging patients to be active partners in their own care. Beyond discussing personal treatment strategies, health providers can educate their patients about CDC-recommended arthritis intervention and physical activity programs (<a target="_blank" href="http://www.cdc.gov/arthritis/interventions/index.htm">www.cdc.gov/arthritis/interventions/index.htm</a>). Administrators might also review these programs to determine which could be adapted by their center to offer their local patient population access to education, joint-friendly physical activity, and support. The American College of Rheumatology also recommends early intervention for best treatment outcomes.</div> <h2 class="ms-rteElement-H2">External Forces Impact Ability To Provide Quality Care</h2> <div>Unfortunately, the business of medicine impacts patient care, specifically the high cost of specialty medications for the autoimmune arthritis patient. In the assisted living and nursing care center environment, the cost of the medications and a patient’s ability to access them, if they need to be infused elsewhere, may also impact care. Payers who require a specific clinical pathway treatment program also directly inhibit a provider’s freedom to treat a patient independent of all financial restrictions, as well. <br><br></div> <div>On the professional side, rheumatologists very likely are not the primary specialist seen by arthritis patients in the long term care setting. Rather, internists or geriatricians may be the first-line physician, but there is a severe shortage of such specialists in the United States, according to a recent report. It would be worthwhile for institutions serving older adults to encourage health professionals to seek arthritis continued medical education opportunities in order to remain engaged in best practices. <br><br></div> <div>Recall that older adults with arthritis may also have one or more comorbid conditions and be seeing several physicians, which is why a team-based, patient-centered approach to understanding how treatment and management strategies impact individual patients is so important. The team needs to keep the lines of communication open. </div> <h2 class="ms-rteElement-H2">Aging And Arthritis</h2> <div>As the baby boomer population ages, more and more patients in the extended care center setting will be impacted by arthritis. Patient-centered care relies on hearing the patient’s concerns about treatment and its impact on their quality of life in order to adjust treatment accordingly. That’s why physicians and nurses need to be active listeners and engaged conversationalists to motivate arthritis patients to be compliant with treatment and report their response to treatment to impact outcomes, particularly since arthritis is a chronic disease for which there is no cure. For example, some patients might benefit from a biologic, but if they cannot tolerate it or afford it, then a course correction will be needed.<br><br></div> <div><img class="ms-rtePosition-1" alt="Jonathan Krant, MD" src="/Issues/2016/June/PublishingImages/JonathanKrant.jpg" style="margin:5px 15px;" />Patients can and should take equal responsibility for complying with treatment recommendations, including taking prescribed medications and incorporating everyday management strategies into their day-to-day routine. Encourage arthritis patients to be equal partners in their care by tracking the symptoms and treatment via <a href="/archives/2016_Archives/Pages/0616/How-Can-Residents-Get-Involved.aspx" target="_blank">ArthritisPower</a> or reaching out for support available locally or online such as via the online support group CreakyJoints. When physicians and patients work together to treat the body and the mind, there are greater opportunities to live well. </div> <div> </div> <div><em>Jonathan Krant, MD, is medical director of CreakyJoints and section chief of rheumatology at Adirondack Health Systems, Saranac Lake, N.Y.</em></div>	As the U.S. population ages, health providers and administrators in assisted living, skilled nursing, and post-acute care centers will need actionable strategies in place to manage the pain, stiffness, and limitations of activity caused by arthritis.	2016-06-01T04:00:00Z	<img alt="" src="/Issues/2016/June/PublishingImages/caregiving_T.jpg" style="BORDER:0px solid;" />	Caregiving;Clinical	Special Feature	Jonathan Krant, MD	43	6
Reenergizing Research While Improving Patient Care	https://www.providermagazine.com/Issues/2016/June/Pages/Reenergizing-Research-While-Improving-Patient-Care.aspx	Reenergizing Research While Improving Patient Care	<div> </div> <div> </div> <p class="ms-rteElement-P"><img class="ms-rtePosition-1" alt="W. Benjamin Nowell" src="/Issues/2016/June/PublishingImages/BenjaminNowell.jpg" style="margin:10px;" />It’s an exciting time to be involved in research because there is now the opportunity to combine traditional clinical effectiveness research with patient-centered outcomes research (PCOR).</p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P">PCOR includes measures important to patients and caregivers such as quality of life, disease symptoms, and safety and engages patients throughout the research process by weighing in on study objectives, design, conduct, implementation, and dissemination. PCOR encourages other stakeholders such as physicians, payers, and policymakers to understand what is important to patients and address responsive research questions. Essentially, PCOR helps bridge the communication gap between health care payers, systems, and providers with patients or residents and caregivers. <br></p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P">PCOR also speeds the dissemination of research findings back to patients and other stakeholders who use the most current information in health care decisions. </p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P">And residents of long term care facilities can participate as well. (<em>For more information, see </em><a href="/archives/2016_Archives/Pages/0616/How-Can-Residents-Get-Involved.aspx" target="_blank"><em>“How Can Residents Get Involved?”</em></a>)</p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P">For rheumatologic conditions, PCOR has the potential to make a tremendous impact. Whereas treatment decision making for many rheumatologic conditions has traditionally depended primarily on x-rays, lab tests, and clinical assessment of relevance to clinicians, PCOR enables researchers to learn how treatments affect patients’ ability to manage symptoms and maintain their quality of life outside of the clinic. <br></p> <p class="ms-rteElement-P"> </p> <p class="ms-rteElement-P">PCOR brings both perspectives together, identifying optimal approaches to manage and study chronic diseases, particularly complex conditions such as rheumatoid arthritis, vasculitis, or pediatric rheumatic disease. </p> <div> </div> <h2 class="ms-rteElement-H2">The PCORI Mandate</h2> <div> </div> <div>Ensuring that stakeholders—who are defined as the actual users of research results—are engaged in the Patient-Centered Outcomes Research Institute (PCORI) research is mandatory. PCORnet provides a formal channel for researchers to approach patient communities as partners as well as participants in eventual studies and analysis. Each Patient Powered Research Network (PPRN) functions as a registry or secured repository of patient-reported data and observational electronic health information.<br></div> <div> </div> <div><br>Most of the PPRNs grew out of existing patient communities, and most will have online (Web) and/or smartphone-based portals that allow patients the ability to access research opportunities directly rather than relying on physician solicitation for participation. This is one example of how PCORI aims to engage and empower patients in health research.</div> <div> </div> <div> </div> <h2 class="ms-rteElement-H2">The Arthritis Networks</h2> <div> </div> <div><img class="ms-rtePosition-2" alt="Jeffrey Curtis" src="/Issues/2016/June/PublishingImages/JeffreyCurtis.jpg" style="margin:5px 15px;" />One of the PPRNs, called ArthritisPower, focuses on rheumatoid arthritis, spondyloarthritis, and other rheumatologic and skin conditions (such as psoriasis). It was created and is managed by the nonprofit arthritis patient advocacy group CreakyJoints in partnership with the University of Alabama at Birmingham.<br><br></div> <div> </div> <div>Within ArthritisPower, a Patient Governor Group (essentially a patient steering committee) combs through research requests coming in from patients and researchers wanting to partner with the patient community, and then helps prioritize which questions will be developed into studies. Participating patients choose which studies to participate in and enter their health care data via a mobile- and computer-based application that runs on iPhones, Android devices, or in a browser on desktop PCs.<br><br></div> <div> </div> <div>Data collected relate to sleep, pain, fatigue, and more, although individual studies can be designed to elicit other types of longitudinal data. Study results will be reported directly to participants inside the application (and shared peer-to-peer via presentations and publications), thus closing the loop from inception to completion and dissemination.<br><br></div> <div> </div> <div>Besides ArthritisPower, two other PPRNs focus on rheumatologic conditions. The Vasculitis PPRN focuses on all forms of vasculitis and is a partnership between the Vasculitis Clinical Research Consortium (investigators) and the Vasculitis Foundation (patients).<br><br></div> <div> </div> <div>The Patients, Advocates, and Rheumatology Teams Partner for Research and Service (PARTNERS) PPRN is a collaboration between disease-specific advocacy groups (Arthritis Foundation, Cure JM Foundation, Lupus Foundation of America), a quality improvement network (PR-COIN—Pediatric Rheumatology Care & Outcomes Improvement Network), and a research network (CARRA—Childhood Arthritis and Rheumatology Research Alliance).<br><br></div> <div> </div> <div>Each of these patient networks is eager to partner with clinical researchers to support new projects and initiatives using the infrastructure that has been newly established.</div> <div> </div> <h2 class="ms-rteElement-H2">Patient-Centered Priorities In Rheumatology</h2> <div> </div> <div>Traditional health research has brought remarkable advances in treating rheumatic diseases in children and adults, yet there are limitations.<br><br></div> <div> </div> <div><img class="ms-rtePosition-2" alt="Peter Merkel, MD" src="/Issues/2016/June/PublishingImages/PeterMerkel.jpg" style="margin:5px 10px;" />For example, research subjects in many studies, such as Phase III clinical trials, don’t necessarily reflect “real world” patients who often have comorbidities that exclude them from the studies. Yet these unrepresented patient communities raise important clinical management questions that need to be answered in order for clinicians to deliver the best possible care.<br><br></div> <div> </div> <div>Patient-centered research is already underway in the arthritis/rheumatology community. For example, one of the challenges of caring for a patient with arthritis is the large number of treatment options available. Some patients may only be candidates for certain therapies, others are highly sensitive to cost, and still others may prefer pills versus injections.<br><br></div> <div> </div> <div>Liana Fraenkel, MD, of Yale University will soon conduct a large study of patients with the ArthritisPower network to help identify patient characteristics, or “phenotypes,” that can aid physicians in working with patients to choose the best treatment option given patients’ individual preferences.</div> <div> </div> <h2 class="ms-rteElement-H2">Questions To Answer</h2> <div> </div> <div>There are many questions that PCOR research in the rheumatology community could answer, such as:</div> <div> </div> <div>■ How do clinical and patient-reported outcomes compare across different medical treatments for rheumatoid arthritis? And how does the presence of certain comorbidities affect both the choice of treatments and their outcomes?</div> <div> </div> <div>■ How does the availability of forthcoming biosimilar medications affect patient treatment selection? What are the patient and/or provider motivations for making a medication switch?</div> <div> </div> <div>■ How do side effects or less serious but nevertheless bothersome symptoms such as nausea impact medication adherence?</div> <div> </div> <div>■ What is the relative safety and effectiveness of different biologic medications across both directly and indirectly related health domains (such as sleep, fatigue, depression)?<br><br></div> <div> </div> <div>Indeed, now that PCORnet is in its second year, groundbreaking research that crosses multiple conditions is in the pipeline. Glucocorticoids, newer and traditional synthetic DMARDs, and biologic medications are used to treat a range of rheumatologic and other conditions.<br><br></div> <div> </div> <div>Studies that span multiple PPRNs are being proposed to study the comparative safety and effectiveness of these and other medications currently available and those to come, as well as to revisit the safety of older medications that may have deleterious effects in the long term, such as glucocorticoids. </div> <div> </div> <div> </div> <h2 class="ms-rteElement-H2">Physicians Build Confidence</h2> <div> </div> <div>Physicians and other health care providers have reason to be excited about PCORnet and, in particular, about PPRNs like ArthritisPower, the V-PPRN, and PARTNERS, and to encourage their patients to actively participate in patient-centered research. The longitudinal data reported by patients can support understanding of their own health while pushing research forward for everyone.<br><br></div> <div> </div> <div>Within the ArthritisPower application designed to capture registry data, patients can track their own symptoms and generate personal reports to share with a physician. Functionality such as this can help patients and doctors work together to choose the best treatment options.<br><br></div> <div> </div> <div>The new patient-centered research paradigm relies on robust patient engagement. Rheumatologists, rheumatology researchers, and patient advocacy organizations—like CreakyJoints, the Vasculitis Foundation, the Arthritis Foundation, Lupus Foundation of America, and Cure JM Foundation—are making this a reality. <br></div> <div> </div> <div> </div> <div> </div> <div><em><img class="ms-rtePosition-1" alt="Laura Schanberg, MD" src="/Issues/2016/June/PublishingImages/LauraSchanberg.jpg" style="margin:5px 15px;" />W. Benjamin Nowell, PhD, LMSW, is director, patient-centered research, of Global Healthy Living Foundation/CreakyJoints, and co-principal investigator for ArthritisPower. Peter A. Merkel, MD, MPH, is chief, Division of Rheumatology, and professor of medicine and epidemiology at the University of Pennsylvania and co-principal investigator of the Vasculitis Patient-Powered Research Network. Laura E. Schanberg, MD, is professor of pediatrics and co-chief, Division of Pediatric Rheumatology, at Duke University School of Medicine and principal investigator of PARTNERS PPRN. Jeffrey R. Curtis, MD, MS, MPH, is the William J. Koopman Endowed Professor in Rheumatology and Immunology at the University of Alabama at Birmingham, Division of Clinical Immunology and Rheumatology, and co-principal investigator for ArthritisPower.</em></div>	It’s an exciting time to be involved in research because there is now the opportunity to combine traditional clinical effectiveness research with patient-centered outcomes research.	2016-06-01T04:00:00Z	<img alt="" src="/Issues/2016/June/PublishingImages/arthritis_t.jpg" style="BORDER:0px solid;" />	Caregiving;Clinical	Special Feature	W. Benjamin Nowell, PhD, Peter A. Merkel, MD, Laura E. Schanberg, MD, and Jeffrey R. Curtis, MD	43	6

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