For some, everything that could go wrong already did.                                               So now what?

This is an article about the reasons for the varied symptomatology found with Lyme Disease, and interestingly, COVID. Lyme disease is the most prevalent vector-borne disease in North America and Europe and one of the fastest growing infectious diseases in the US. Vector-borne means there is a living organism that can transmit infections between humans or from animals to humans. For example the mosquito is the vector that transmits malaria or the tick is the vector that transmits Lyme disease. Vectors can transmit parasites, viruses, or bacteria. (WHO/home/newsroom/fact sheets/detail/vector-born diseases, accessed 19 Feb 2024.) This synopsis is based on the research of Jacob Lemieux who, in 2017 with colleague Pardis Sadbeti, spearheaded the DNA sequencing of Lyme Disease. Because of the genetic diversity of Lyme disease, the sequencing which they thought would take 6 months took 6 years. This complexity is associated with the diverse symptoms seen in people with Lyme disease. The array of symptoms may include arthritis, fatigue, neurological and cardiovascular problems, that may continue for years. The genome of the Lyme disease causing Borrelia spirochete has the double stranded DNA found in most living things. Additionally, there are around 20 plasmids which are small, circular strands of DNA attached to the double strands that can replicate independently of the main DNA strands. These hard-to-sequence plasmids, were found to be critical in understanding the variations in disease severity and symptoms among different people. The plasmids occur only in certain strains. The researchers noted that because of the similarities between Lyme disease and COVID, the wide-ranging and lasting symptoms of Lyme disease have become more familiar to the public in the aftermath of COVID. Different plasmids are associated with different rates of dissemination in the body – rapid dissemination equals more severe symptoms. With this knowledge, it is hoped that new treatments and dissemination suppression may be developed to help mitigate symptoms. This may also involve improved understanding of how diseases, more generally, develop, spread, evolve, and develop drug resistance. Lemieux expressed his understanding that his work is an incremental step that hopefully lays the groundwork for future understanding of complex diseases. As a person experiencing Long COVID (personally, I call it chronic COVID at this point), articles like this are a form of bibliotherapy, as they provide reasons for the unremitting symptoms I have experienced since 2020. I will not begin to describe my symptoms because, as the article notes, they are many and varied. I know I am far from the only person in this situation (there are long covid clinics in some medical centers) and I hope this description provides some form of comfort to others and promotes understanding to those interacting with people experiencing long-term symptoms. For additional reading: www.lemieuxlab.org/jacob-e-lemieux.html www.sabetilab.org www.massgeneral.org/medicine/ciid/research-labs/allen-steere

It is estimated that only 20% of health outcomes are related to clinical care impacts whereas from 50 – 80% of health is related to social determinants. Additionally, steadily increasing health care expenditures are not yielding positive results as outcomes continue to worsen. This trend will continue if unmet health related social needs (UHRSN) are not addressed. Hospitals may try to uncover these needs through manual medical record data abstraction but Navathe, et al. found natural language processing (NLP) to be a more efficient way to identify information in physician notes. It improved the recognition of fall risk, poor social support, and tobacco use. Further, risk factors associated with increased rates of hospital readmission were identified and included housing instability, depression, drug use, and poor social support. This information indicates that without expensive record review there are negative factors generally missed by hospital staff. Even if all UHRSN are identified, are hospitals in the position to successfully confirm and address those issues in a timely manner? Navathe et al. further note that medical records were used to gather data because point-of-care surveys were not automated, nor scalable. This suggests that if such surveys are automated and scalable, they would be a better way to obtain relevant information. This would be particularly true if the point-of-care is the client’s home and electronic information transfer is available as it is through Medicaid mandated Electronic Visit Verification technology. Of importance, in home actions to resolve negative factors may be initiated promptly with information forwarded to supervisors for further follow-up, and for developing policies and procedures. An additional disadvantage of hospitals managing UHRSN to avoid (re)admissions is that even hospitals supporting home care agencies experience an unavoidable conflict of interest because their business models include hospital services. Home care represents health systems existing in parallel with hospital health systems. It is appropriate to task the home care providers with keeping people at home. That is their business model.

Social determinants of health (SDH) are described by the World Health Organization as the non-medical factors that influence health outcomes. They are the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life. These elements represent from 50% to 80% of health yet funders and providers of healthcare often lack information about the burden of adverse SDH, also known as unmet health-related social needs (UHRSN). This void promotes consequential inaction. Without assurances that these needs are managed, funders and providers are failing to rescue people in vulnerable situations. Just as hospitals use Failure to Rescue as an indicator of quality, such an indicator should be in place in the community as well. In-home observation is an efficient and reliable way to fulfil the Community Failure to Rescue indicator which will either assure that needs are met or measure the burden of unmet needs which can inform immediate corrections &/or policies, procedures, and programs aimed at long- and short-term remediation activities. These actions may decrease health care utilization, but even if they do not, they will help close the health gap. Home Care provides an option for identifying and remediating UHRSN. Services include routine visits from Direct Care Workers (DCWs, home health/personal care aides) who are predominantly women, and in many locations over-represented by women of color &/or Medicaid recipients as working poor parents. DCWs assist with activities of daily living and are currently not prepared to address HRSN. Community Health Workers (CHWs), on the other hand, can address HRSN but do not provide personal care and lack numbers to see all home care clients. The goal of this program is to provide training that adds CHW skills to the DCW skill set, creating a hybrid health services position, the Direct Care Community Worker (DCCW). These caregivers will provide personal care and address HRSN by routinely completing needs observations and initiating remediation activities or referrals as indicated. for non-medical needs Such an approach could help clients be healthier while reducing health resource utilization and cost. Additionally, the position provides potential career advancement for DCWs which could increase their current low-wage salaries to lift them out of poverty, decrease staff turnover, and bring other caregivers into this chronically understaffed yet essential field. Over time, data will inform the new quality indicator of Community Failure to Rescue. This program is motivated by the blended values of compassion, empowerment, and fiscal intelligence. Information on this topic will be added weekly.

Community Failure to Rescue as a Standard of Care The Direct Care Community Worker Observation Tool developed for this training program provides a focused look at key screening elements identified by Alley et al. (2016), including housing needs, food insecurity, utility needs, safety, and transportation difficulties. The immediate purpose is to identify elements that negatively impact health in order to inform remediation activities. It will subsequently gauge Community Failure to Rescue (CFTR). Failure to Rescue (FTR) was developed for use in hospitals and is being modified for home care. A premise of FTR as it was originally framed is that Medicare-aged people come into hospitals ready to have complications, so the measure of hospital quality is not an inevitable patient complication, but whether staff members are prepared and handle it (Silber et al., 2007). If someone has a complication and dies, then Failure to Rescue has occurred. FTR events are predicted and preparations are based on statistics about the frequency of complications (Silber et al., 2007). In the home care setting, older Medicaid consumers may be equally complicated, fragile, and vulnerable, and additionally, their lives may be riddled with basic needs insecurities which make them prone to adverse events. CFTR represents people at home, an environment that lacks regulations and supports found in hospitals. Knowing up-front that these clients receive Medicaid services because of long term conditions and lack of financial resources should be sufficient data to prompt observation and remediation efforts. Care providers should observe for and be ready to handle the same inevitable complications found in hospitals, in addition to the unpredictable and possibly profound complications of life that consumers experience and that impact health care utilization, morbidity, and mortality. DCWs will continue to report clinical problems and will additionally be prepared to observe, report and resolve social issues. Without assurances that social determinants of health are being addressed, then we must assume we are failing to rescue people in vulnerable home care situations. Individualized, on-site data collection for home care clients is the most efficient way to either confirm that needs are met or identify unmet needs. Uncovering the status of SDH in home care does not require high-tech methods if there is a trained caregiver in the home. For most health determinants, the observation tool will be self-validating; if one sees the air conditioner does not work, then it does not work. Similar observations will be completed for food availability, heat, running water and other SDH. A person with limited training can observe and help to resolve many social issues which fulfills the program values of compassion and fiscal intelligence. References Alley, D.E., Asomugha, C.N., Conway, P.H., & Sanghavi, D.M. (2016). Accountable health communities – Addressing social needs through Medicare and Medicaid. New England Journal of Medicine, 374(1), 9-11. DOI: 10.1056/NEJMp1512532. Silber, J.H., Romano, P.S., Rosen, A.K. (2007). Failure-to-Rescue: Comparing Definitions to Measure Quality of Care, Medical Care, 45(10), 918-925. © Marti Trudeau 2020 Any use of these materials, including reproduction, modification, distribution or republication, without the prior written consent of the author, is strictly prohibited.

MET Healthcare Innovations is a start-up company with the goal of enhancing home care services to address Social Determinants of Health (SDH) which are factors of normal life that can impact health. Those who fund and provide home care services often lack information about the burden of these factors in the homes of people receiving personal care services. The Direct Care Community Worker (DCCW) program adds skills of a community health worker to those of a direct care worker (home health aide) so social problems and personal care will be addressed. The funding and implementation of this program will have a significant impact on client morbidity and quality of life resulting in cost savings from more appropriate healthcare utilization. The initial focus of the DCCW program is on Philadelphia's older Medicaid consumers who are receiving home care services due to long term disabling conditions. As the poorest large city in the U.S., Philadelphia has well documented social problems. This is seen in clear indicators of poverty. Food insecurity effects more than 20% of the population. The average life span for those living in the highest poverty areas is 20 years less than those in wealthier areas. The Medicaid population is more than twice the size of the entire population of Pittsburgh. Addressing these inequalities will take a multi-prong approach and the DCCW program is one prong. Although an up-front investment in this solution will be necessary, projects throughout the U.S. have shown significant returns on investment from resolving negative social determinants of health. Please return to this site to find out more about how this program evolves.

Motto: Think straight, plan carefully, act boldly. – Clara Barton Mission To provide Medicaid consumers who are >60 and receiving home care services, with the opportunity to live healthier lives by relieving them of at least some of the burden of negative social elements in their environment. To develop training, tools, and a career trajectory for Direct Care Workers which will enable them to take on the new hybrid role of Direct Care Community Worker. To provide financially engaged stakeholders with the opportunity to act compassionately and with fiscal intelligence. Vision Medicaid consumers will have fewer illnesses, appropriate use of healthcare resources, and will be highly satisfied with their in-home care providers, health plans, and other service providers. Funders will have a 100% return on Negative Social Determinants of Health remediation investment because of decreased resource use. The new Direct Care Community Workers will receive a living wage. This position will serve as a step on a career trajectory. Values This program maintains the blended values of Compassion and Fiscal Intelligence, with Compassion focusing on Medicaid consumers and caregivers, and Fiscal Intelligence focusing on service providing agencies and Medicaid health plans. Home Care is the most basic form of health care delivery, presents the most reliable information about the presence or absence of negative social determinants of health, and allows immediate remediation opportunities. Empowerment is a key aspect of this program. Direct Care Workers will be empowered with enhanced knowledge and the redefined role of Direct Care Community Worker. They will, in turn, empower their clients to live healthier lives.

A training manual has been developed for experienced Direct Care Workers (DCWs, aka Home Health Aides) which will be used to instruct them on the duties generally identified with Community Health Workers (CHWs). Upon successful completion of this program, participants will be prepared to serve in the hybrid position of Direct Care Community Worker (DCCW). In addition to providing personal care to older clients, the DCCW will be equipped to recognize and address negative social determinants of health (NSDH), while enhancing their clients’ abilities to resolve such issues and to self-advocate. The aim is to improve clients’ quality of life and decrease preventable health care utilization and cost. This training provides the knowledge, skills, and tools to observe, resolve, and report negative social elements found in clients’ homes and to identify when additional help is needed for complex or clinical issues. This new position will provide a career trajectory for DCWs that could provide a living wage and may also draw people into the field of direct caregiving. Funders will realize cost savings from decreased health care utilization which will offset a higher reimbursement rate for these specialized caregivers. Because they know their clients and are with them regularly, DCWs are in a trusted position to help resolve NSDH. This type of assistance is within their abilities and standards of practice which include observing, reporting and documenting; and maintaining a clean, safe, and healthy environment (Legal Information Institute, 2019; Pennsylvania Department of Health, 2019). This training will provide resources to immediately address many social problems. Given the importance of resolving NSDH, it is sensible to utilize the potential of this workforce which until now has been an untapped resource. In Pennsylvania, the Department of Health identifies core competencies for CHWs as communication skills, interpersonal skills, knowledge of the community/specific health issues/health and social service systems; service coordination skills, capacity building skills, advocacy skills; teaching skills and organizational skills (National Academy for State Health Policy (NASHP), 2015 ). The PA DoH further defines in-home services provided by CHWs to include nutrition education, home health and safety assessments, and prevention education (NASHP, 2015). Combining these skills with those of DCWs will most efficiently provide a well-rounded care experience for in-home clients. This project is driven by the values and key strategies of Compassion, Fiscal Intelligence, and Empowerment. Compassion focuses on Medicaid consumers and DCWs while Fiscal Intelligence focuses on service providers and funders. All stakeholders may be empowered by the activities, outcomes, and impacts. This blended strategy leads to remediation efforts that will improve quality of life and reduce costs. Stephen Trzeciak, MD, of Cooper University Health Care in Camden, N.J., uses the term “compassionomics” to depict the economic element of compassion (Trzeciak, 2018). He points out that client-focused, compassionate care is associated with lower resource use and higher quality, fewer errors, and better compliance, as well as positive physiologic changes like stress and pain reduction for patients, and less burn-out for care providers (2018). More recently he found that compassionate care can help prevent post-traumatic stress disorder (Burling, 2019). In brief, compassion promotes fiscal intelligence. Recent successful efforts to resolve NSDH are found in various locations around the U.S. (Morse, 2018; Sandburg et al., 2014; Shah, Rogers, & Kanter, 2016). Such efforts should be appreciated for what they have accomplished, and a home care focus should be added to the array of options to impact social problems at their core. The CHW role has been identified as an essential element of a broad health promotion campaign and is described as, “…community members who are trained to bridge the gap between healthcare providers and patients.” (Kangovi, Grande &Trinh-Shevrin, 2015, p. 2277). With this training, DCWs, who are trained to provide personal care, will add CHW duties to become DCCWs with the skills to bridge the gaps between consumers and health systems, society, and better health. DCCWs will be trained as observers who strive to understand consumers and their environments in order to appreciate how to help them be happy and healthy. This information will help pinpoint problems, identify them as relevant to the consumer, and develop remediation actions. Check back for periodic updates. References Burling, S. (2019, March 19). Pa.’s new rules for low-income seniors: For those on Medicare and Medicaid, it’s complicated. The Philadelphia Inquirer, A9 & A11. Kangovi, S., Grande, D., & Trinh-Shevrin, C. (2015, June 11). From rhetoric to reality – Community health workers in post-reform U.S. health care. The New England Journal of Medicine Perspective. DOI: 10.1056/NEJMp1502569 Legal Information Institute. (2019). 42 CFR 484.36 – Condition of participation: Direct Care Worker services. Retrieved from https://www.law.cornell.edu/cfr/text/42/484.36 Morse, S. (2018, July 5). What Montefiore's 300% ROI from social determinants investments means for the future of other hospitals. Healthcare Finance. Retrieved from https://www.healthcarefinancenews.com/news/what-montefiores-300-roi-social- determinants-investments-means-future-other-hospitals# National Academy for State Health Policy. (2015). State community health worker models: Pennsylvania. Retrieved from https://nashp.org/state-community-health-worker-models/ Pennsylvania Department of Health. (2019). Home care agencies regulations. Retrieved from https://www.health.pa.gov/topics/facilities/home-care/Pages/Home-Care-Regulations.aspx Sandberg, S. F., Erikson, C., Owen, R., Vickery, K. D., Shimotsu, S.T., Linzer, M., … DeCubellis, J. (2014). Hennepin health: A safety-net accountable care organization for the expanded Medicaid population. Health Affairs, https://doi.org/10.1377/hlthaff. 2014.0648 Shah, N. R., Rogers, A. J., & Kanter, M. H. (2016, April 13). Health Care that targets unmet social needs. New England Journal of Medicine Catalyst, Retrieved from https://catalyst.nejm.org/health-care-that-targets-unmet-social-needs/ Trzeciak, S. (2018). Can 40 seconds of compassion make a difference in health care? Knowledge @ Wharton, Aug.6. Retrieved from http://knowledge.wharton.upenn.edu/ article/the-compassion-crisis-one-doctors-crusade-for- caring/?utm_source=kw_ newsletter&utm_medium=email&utm_campaign=2018-08-09

Community Health Workers (CHWs) have distinct qualifications like communication skills, interpersonal skills, knowledge of community services; advocacy, service coordination, and client empowerment; teaching and organizational skills. They are often connected to hospitals or health systems and are familiar with and part of the community. Their goal is to help their clients live healthy lives. CHWs help their clients resolve negative social determinants of health; negative aspects of where people live, learn, work, and play that impact their health. Social Determinants of health (SDH) may be positive or negative. Positive determinants are things like food in the kitchen, ability to pay for needed medications, and transportation to the doctor's office. Negative determinants would be the opposite of the positive elements and may also include lacking air conditioning in the summer, living in an unsafe structure, or having utilities turned off. CHWs provide much needed services, but what if a person in need does not have a CHW? There are many older people receiving Medicaid benefits for long term disabling conditions who have Direct Care Workers (DCWs) with them routinely to help with personal care like bathing, cooking, assistance with moving around, etc. These workers, also known as Home Health Aides, have never been trained to observe for or resolve the negative elements found in the homes of their clients and so are untapped resources for addressing them. Combining CHW skills with those of DCWs will most efficiently provide a well-rounded care experience for in-home clients. This role is being developed and is called a Direct Care Community Worker (DCCW). Please return to this site to find out more.