10c IMPROVING LINKAGES AND REFERRALS TO THE BROADER HEALTH SYSTEM… FOR DIGNIFIED, PERSON-CENTERED CARE AMIDST DEMOGRAPHIC CHANGE THE CHALLENGE In mature health systems, specialty care systems are well developed—but integration between primary care and specialty services can be poor or nonexistent, leading to missed referrals, duplication of basic diagnostics and care, long wait times, and a lack of follow-up. Forward-looking frontline services will need to develop stronger two- way linkages and referrals with specialist networks, helping ensure continuity of care from primary care to specialist appointments and hospitals —and back again to the community. REFERRALS CAN BE LATE OR INCOMPLETE In some mature health systems, long wait times to see a specialist can delay needed care or lead to missed referrals. Scheduling an appointment with a specialist can frequently require wait times of two months or longer;i where specialist services are overstretched, large portions or referral requests can go completely unanswered and incomplete.ii In some countries where insurance coverage is incomplete, cost barriers can also prevent patients from seeking recommended follow-up or specialist services; 38% of Americans with chronic conditions reported skipping a “recommended test, treatment, or follow-up” over the past two years because of cost considerations.iii Overall, studies suggest highly variable rates of referral completion, ranging from 87% to as low as 50% among some populations.iv Communication Breaks Down Between Primary Care Services and Referral Physicians Limited communication and integration between referring and specialist physicians can hamper the quality of care and lead to duplication. Up to half of primary care physicians in the U.S. do not know if their patients have completed referrals,v and information-sharing between primary care doctors and specialists can be poor. In a 2008 survey in eight high- income countries, 12%–32% of respondents with chronic conditions complained that the specialist had little to no information about their medical histories, and 14%–34% reported either duplication of basic diagnostic tests or that the specialist lacked results at the time of Japan Trust Fund for OCTOBER 2018 Scaling Up Nutrition IMPROVING LINKAGES AND REFERRALS TO THE BROADER HEALTH SYSTEM… FOR DIGNIFIED, PERSON-CENTERED CARE AMIDST DEMOGRAPHIC CHANGE the appointment.vi Integration gaps can be even larger when leaving hospital care and Poor integration returning home. Direct communication between hospital physicians and primary care between primary and providers is extremely rare, discharge summaries often lack key information on patient care specialty care leads to plans or test results, and few primary care physicians receive the discharge summary before a missed referrals, patient’s first post-discharge appointment.vii Just 35% of U.S. specialists reported consistent receipt of patient histories before referral appointments in a 2008 surveys, and 63% of delays, and lack of referring physicians reported consistent receipt of consultation outcomes.viii More recent follow-up, findings confirm that little has changed; a 2016 survey across 11 high-income countries found highlighting the need that 19-35% of patients experienced at least one problem with care coordination over the for stronger linkages past 2 years.ix between these networks. Patients Can Fall Through the Cracks Poor care integration can put patient health and safety at risk. In a large-scale U.S. study of claims data for patients with chronic disease, more fragmented care was significantly associated with departures from clinical best practice, preventable hospitalizations, and far higher total health care expenditure.x Other studies have documented patient safety risksxi Studies have and high rates of medical errors related to discontinuity between hospitals and outpatient primary care providers.xii documented patient safety risks and high rates of medical THE PATH FORWARD: STRENGTHENING errors related to CONNECTIONS discontinuity between hospitals Helping Patients Navigate a Complex Health System and primary care In mature health systems, human resource and technological interventions can help patients providers. make sense of an increasingly complex health system, helping ensure completion of referrals and better coordination of care processes. Patient “navigators” or “advocates” are specially- trained individuals who help patients navigate all aspects of the healthcare system—including clinical processes like diagnosis, screening, and follow-up; administrative issues like appointment scheduling and insurance claims; and social support for patients and their families.xiii (See Spotlight below.) A recent systematic review suggests strong evidence that patient navigators can help improve care processes, particularly for cancer screening and diagnosis, but clinical and cost-related outcomes remain understudied.xiv Web-based information and scheduling portals can also help streamline referrals and reduce A recent systematic waiting times. Though evidence is limited, a few available studies suggest that direct review suggests appointment booking services, typically over an online portal, have been associated with strong evidence that substantial reductions in the waiting time for non-urgent specialist services, though not with patient navigators can cost reductions.xv Such platforms are increasingly being adopted at scale within countries in help improve care the Organization for Economic Co-operation and Development. In the United Kingdom, all processes, but clinical National Health Service providers are required to adopt an e-referral system for specialist and cost-related consultations (e-RS) by October 2018; the platform enables patients to book a specialist appointment from their general practitioner’s office at the time of referral, or to do so from outcomes remain their personal computer after returning home.xvi An initial pilot study suggests that the new understudied. system can reduce waiting times for a specialist appointment by an average of eight days.xvii OCTOBER 2018 2 IMPROVING LINKAGES AND REFERRALS TO THE BROADER HEALTH SYSTEM… FOR DIGNIFIED, PERSON-CENTERED CARE AMIDST DEMOGRAPHIC CHANGE Top Interventions Intervention Evidence Strength Research Findings Patient Navigators Moderate Positive Direct Scheduling Platforms Moderate Positive Co-Location Low Mixed E-Consultations Moderate Positive Bringing Comprehensive Health Services Closer to Primary Care An alternative approach to improving referrals brings specialist providers closer to the site of Co-locating primary primary care—either via physical co-location or through remote e-consultations. Co-located care service with a primary care services share a physical space with at least one specialist provider (not specialist or other necessarily physicians) or other health and wellness services, with varying levels of service integration. In theory, physical co-location of general practitioners with specialist providers health services may can help streamline referral processes, integrate medical records, and create better be one way to continuity of care across multiple types of health provider. Cross-country survey data finds improve the referral highly variable rates of co-location between general practitioners and other health process, but evidence professionals; rates of co-location can be as low as 5% or 6% (Slovakia, Germany, Denmark, is limited and mixed. Czech Republic) and as high as 90%–99% (Iceland, Lithuania).xviii Evidence is limited and mixed. Analysis of survey data suggests that co-location of general practitioners with specialists, midwives, physiotherapists, dentists, or pharmacists is significantly associated with improved coordination with secondary care; however, in countries with weak primary care systems, co-location is significantly associated with worse patient perceptions of care continuity, accessibility, and comprehensiveness.xix Patient-centered medical homes—a specific model of co-location and care integration used in the United States—have been associated with small magnitude but significant improvements in patient outcomes and care coordination, among other benefits (see Brief 7c). A study from Italy also found associations between co-location and patient satisfaction among frequent users of health services.xx With e-consults, the Short of physical co-location, electronic consultations (e-consults) are defined as limited existing “asynchronous, consultative, provider-to-provider communications within a shared electronic evidence shows health record (EHR) or web-based platform,” allowing general practitioners to directly access generally higher specialist expertise and avoiding in-person referrals unless necessary.xxi Evidence shows patient and provider generally high provider and patient satisfaction with e-consult platforms; shorter wait times satisfaction as well as than for traditional in-person referrals; a reduction in face-to-face specialist appointments; shorter wait times. and potential for reduced cost.xxii There is limited rigorous evidence for the effect of e- consults on health outcomes.xxiii OCTOBER 2018 3 IMPROVING LINKAGES AND REFERRALS TO THE BROADER HEALTH SYSTEM… FOR DIGNIFIED, PERSON-CENTERED CARE AMIDST DEMOGRAPHIC CHANGE SPOTLIGHT Patient Navigators ► There is no single agreed definition for patient navigators; a recent systematic review defines the approach as “trained personnel”—potentially nurses, social workers, community health workers, or volunteers—"who help patients overcome modifiable barriers to care and achieve their care goals by providing a tailored approach to addressing individual needs.”xxiv Patient navigation services can be quite wide in scope, encompassing all aspects of clinical, logistical, administrative, and emotional support, typically for chronic or life-threatening conditions like cancer.xxv (This expansive mandate should be distinguished from the cadre of patient navigators established in the United States under Affordable Care Act, who offer free-to-consumer guidance on selecting and enrolling in marketplace health insurance plans but not comprehensive care support for specific conditions.)xxvi The patient navigation approach first emerged in 1990 as a way to address extremely high death rates among disadvantaged breast cancer patients in a Harlem public hospital, largely caused by late diagnosis and long delays before the initiation of treatment.xxvii When combined with free or low-cost screening and diagnostic services, the patient navigators helped contribute to major improvements in 5-year survivorship, rising from 39% pre-intervention to 70% after implementation.xxviii Use of the patient navigation model for cancer care expanded rapidly in the 2000s, supported by grants from private foundations and later with U.S. government funding under the Patient Navigator, Outreach, and Chronic Disease Prevention Act of 2005.xxix More recently, patient navigators have been used to guide patients with other complex and chronic diseases, including diabetes and HIV.xxx The current evidence base is incomplete, but generally suggests that patient navigators can be associated with more complete screening; faster diagnostic resolution; better mental health and quality of life among patients and their caregivers; lower A1C levels among diabetics; and higher clinical attendance and treatment adherence.xxxi Patient navigators generate additional costs (training, office space, salaries, etc.),xxxii but could be cost-effective or even cost-saving if they produce better clinical outcomes, reduce appointment no-shows, or prevent duplication. Empirical evidence on the cost-effectiveness of this approach remains highly limited, with mixed findings in different populations. xxxiii ENDNOTES i Cathy Schoen et al., “In Chronic Condition: Experiences of Patients with Complex Health Care Needs, in Eight Countries, 2008,” Health Affairs (Project Hope) 28, no. 1 (February 2009): w1-16, https://doi.org/10.1377/hlthaff.28.1.w1; The Commonwealth Fund, “International Health Care System Profiles: Waited Two Months or More for Specialist Appointment, 2016,” The Commonwealth Fund, accessed October 11, 2018, https://international.commonwealthfund.org/stats/waited_two_months/. OCTOBER 2018 4 IMPROVING LINKAGES AND REFERRALS TO THE BROADER HEALTH SYSTEM… FOR DIGNIFIED, PERSON-CENTERED CARE AMIDST DEMOGRAPHIC CHANGE ii Ieva Neimanis et al., “Referral Processes and Wait Times in Primary Care,” Canadian Family Physician 63, no. 8 (August 2017): 619–24. iii Schoen et al., “In Chronic Condition.” iv Rodger Kessler, “Mental Health Care Treatment Initiation When Mental Health Services Are Incorporated Into Primary Care Practice,” The Journal of the American Board of Family Medicine 25, no. 2 (March 1, 2012): 255–59, https://doi.org/10.3122/jabfm.2012.02.100125; Michael Weiner, Anthony J. Perkins, and Christopher M. Callahan, “Errors in Completion of Referrals among Older Urban Adults in Ambulatory Care,” Journal of Evaluation in Clinical Practice 16, no. 1 (February 2010): 76–81, https://doi.org/10.1111/j.1365-2753.2008.01117.x; Christel E. van Dijk et al., “Compliance with Referrals to Medical Specialist Care: Patient and General Practice Determinants: A Cross-Sectional Study,” BMC Family Practice 17 (February 1, 2016), https://doi.org/10.1186/s12875-016-0401-7; C. B. Forrest et al., “Specialty Referral Completion Among Primary Care Patients: Results From the ASPN Referral Study,” The Annals of Family Medicine 5, no. 4 (July 1, 2007): 361–67, https://doi.org/10.1370/afm.703. v Ateev Mehrotra, Christopher B. Forrest, and Caroline Y. Lin, “Dropping the Baton: Specialty Referrals in the United States,” The Milbank Quarterly 89, no. 1 (March 2011): 39–68, https://doi.org/10.1111/j.1468-0009.2011.00619.x. vi Schoen et al., “In Chronic Condition.” vii Sunil Kripalani et al., “Deficits in Communication and Information Transfer between Hospital-Based and Primary Care Physicians: Implications for Patient Safety and Continuity of Care,” JAMA 297, no. 8 (February 28, 2007): 831–41, https://doi.org/10.1001/jama.297.8.831. viii Ann S. O’Malley and James D. Reschovsky, “Referral and Consultation Communication between Primary Care and Specialist Physicians: Finding Common Ground,” Archives of Internal Medicine 171, no. 1 (January 10, 2011): 56–65, https://doi.org/10.1001/archinternmed.2010.480. ix The Commonwealth Fund, “2016 International Survey of Adults,” The Commonwealth Fund, accessed October 11, 2018, https://international.commonwealthfund.org/data/2016/. x Brigham R. Frandsen et al., “Care Fragmentation, Quality, and Costs Among Chronically Ill Patients,” American Journal of Managed Care 21, no. 5 (May 2015). xi Christopher L. Roy et al., “Patient Safety Concerns Arising from Test Results That Return after Hospital Discharge,” Annals of Internal Medicine 143, no. 2 (July 19, 2005): 121–28. xii Carlton Moore et al., “Medical Errors Related to Discontinuity of Care from an Inpatient to an Outpatient Setting,” Journal of General Internal Medicine 18, no. 8 (August 2003): 646–51, https://doi.org/10.1046/j.1525-1497.2003.20722.x. xiii National Cancer Institute, “NCI Dictionary of Cancer Terms: Patient Navigator,” National Cancer Institute, accessed October 11, 2018, https://www.cancer.gov/publications/dictionaries/cancer- terms. xiv Kerry A. McBrien et al., “Patient Navigators for People with Chronic Disease: A Systematic Review,” PLOS ONE 13, no. 2 (February 20, 2018): e0191980, https://doi.org/10.1371/journal.pone.0191980. xv Luciana Ballini et al., “Interventions to Reduce Waiting Times for Elective Procedures,” Cochrane Database of Systematic Reviews, 2015, https://doi.org/10.1002/14651858.CD005610.pub2. xvi NHS, “NHS E-Referral Service,” NHS Digital, accessed October 11, 2018, https://digital.nhs.uk/services/nhs-e-referral-service. xvii Kripalani et al., “Deficits in Communication and Information Transfer between Hospital-Based and Primary Care Physicians.” xviii M. Bonciani et al., “The Benefits of Co-Location in Primary Care Practices: The Perspectives of General Practitioners and Patients in 34 Countries,” BMC Health Services Research 18, no. 1 (February 21, 2018): 132, https://doi.org/10.1186/s12913-018-2913-4. xix Bonciani et al. xx Manila Bonciani, Sara Barsanti, and Anna Maria Murante, “Is the Co-Location of GPs in Primary Care Centres Associated with a Higher Patient Satisfaction? Evidence from a Population Survey in Italy,” BMC Health Services Research 17, no. 1 (April 4, 2017): 248, https://doi.org/10.1186/s12913-017-2187-2. xxi Varsha G. Vimalananda et al., “Electronic Consultations (e-Consults) to Improve Access to Specialty Care: A Systematic Review and Narrative Synthesis,” Journal of Telemedicine and Telecare 21, no. 6 (September 2015): 323–30, https://doi.org/10.1177/1357633X15582108. OCTOBER 2018 5 IMPROVING LINKAGES AND REFERRALS TO THE BROADER HEALTH SYSTEM… FOR DIGNIFIED, PERSON-CENTERED CARE AMIDST DEMOGRAPHIC CHANGE xxii Vimalananda et al.; Clare Liddy et al., “A Systematic Review of Asynchronous, Provider-to-Provider, Electronic Consultation Services to Improve Access to Specialty Care Available Worldwide,” Telemedicine and E-Health, June 21, 2018, https://doi.org/10.1089/tmj.2018.0005. xxiii Vimalananda et al., “Electronic Consultations (e-Consults) to Improve Access to Specialty Care”; Liddy et al., “A Systematic Review of Asynchronous, Provider-to-Provider, Electronic Consultation Services to Improve Access to Specialty Care Available Worldwide.” xxiv McBrien et al., “Patient Navigators for People with Chronic Disease.” xxv National Cancer Institute, “NCI Dictionary of Cancer Terms: Patient Navigator.” xxvi U.S. Centers for Medicare and Medicaid Services, “Navigator,” HealthCare.gov, accessed October 11, 2018, https://www.healthcare.gov/glossary/navigator/. xxvii H. 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Accessed October 11, 2018. https://international.commonwealthfund.org/data/2016/. OCTOBER 2018 7 IMPROVING LINKAGES AND REFERRALS TO THE BROADER HEALTH SYSTEM… FOR DIGNIFIED, PERSON-CENTERED CARE AMIDST DEMOGRAPHIC CHANGE _____. “International Health Care System Profiles: Waited Two Months or More for Specialist Appointment, 2016.” The Commonwealth Fund. Accessed October 11, 2018. https://international.commonwealthfund.org/stats/waited_two_months/. U.S. Centers for Medicare and Medicaid Services. “Navigator.” HealthCare.gov. Accessed October 11, 2018. https://www.healthcare.gov/glossary/navigator/. Vimalananda, Varsha G., Gouri Gupte, Siamak M. Seraj, Jay Orlander, Dan Berlowitz, Benjamin G. Fincke, and Steven R. Simon. “Electronic Consultations (e-Consults) to Improve Access to Specialty Care: A Systematic Review and Narrative Synthesis.” Journal of Telemedicine and Telecare 21, no. 6 (September 2015): 323–30. https://doi.org/10.1177/1357633X15582108. Weiner, Michael, Anthony J. Perkins, and Christopher M. Callahan. “Errors in Completion of Referrals among Older Urban Adults in Ambulatory Care.” Journal of Evaluation in Clinical Practice 16, no. 1 (February 2010): 76–81. https://doi.org/10.1111/j.1365-2753.2008.01117.x. Wells, Kristen J., Tracy A. Battaglia, Donald J. Dudley, Roland Garcia, Amanda Greene, Elizabeth Calhoun, Jeanne S. Mandelblatt, Electra D. Paskett, and Peter C. Raich. “Patient Navigation: State of the Art , or Is It Science?” Cancer 113, no. 8 (October 15, 2008): 1999–2010. https://doi.org/10.1002/cncr.23815. Whitley, Elizabeth, Patricia Valverde, Kristen Wells, Loretta Williams, Taylor Teschner, and Ya-Chen Tina Shih. “Establishing Common Cost Measures to Evaluate the Economic Value of Patient Navigation Programs.” Cancer 117, (August 2011): 3616–23. https://doi.org/10.1002/cncr.26268. OCTOBER 2018 8