The healthcare industry is doing a less than spectacular job of engaging patients in their healthcare. The complexity and administrative burden of healthcare often creates an unpleasant patient experience. Hospitals and health systems are adding executive leadership and teams to address patient engagement, but many times these efforts are not addressing the core issues and dysfunctions perceived by patients. The patient engagement efforts too often focus on marketing and reducing the hospitals administration costs instead of building a collaborative relationship with patients.

Physician clinics also struggle with patient engagement. Legislation and regulations to protect patient data have increased administrative requirements and restricted remote communications between patients and clinicians via email and text. With criminal charges for mishandling patient data, the portability and interoperability goals of legislation are encumbered by the data privacy provisions of the same legislation. The ability to leverage technology to improve communications and engagement with patients has been similarly encumbered.

Though the intent of the data privacy provisions is good (protection of personal health data is critical to patients), the dissemination of medical information and personal health information is crucial for the patient to engage and take ownership of their health. This information must be available to the full set of clinicians working with the patient, and also the family, friends, or caregivers who are engaged at the request of the patient.

Interoperability between physicians and specialists receives a lot of press, as it should. But the healthcare industry must remember that the care of the patient, especially elderly or critically ill patients, involves two teams of people. The first is the team of clinicians supporting the clinical care. The second, equally important team is the patient’s support system of family, friends, and/or caregivers.

This article, the third of Healthscient’s series on the United States Healthcare System, is focused on the opportunities to better empower this patient support system to aid in the patient’s care and recovery. The rest of the series can be found at “Articles and Essays”.

Strain on the Sandwich Generation

Our ability to handle our own healthcare changes as we move from children to adults to elderly adults. As children, we need our parent’s assistance to help address our medical issues. As we age or acquire serious illnesses or conditions, we need additional support from others to provide our own care. The assistance can range from simple transportation to a complete takeover of care decisions and activities.

This progress can land parents in a precarious position. Parents – already in the position of caring for themselves and their children – are more and more often needing to care for their elderly parents at the same time that they are still raising and caring for their children. In Pew Research Centers 2013 article, “The Sandwich Generation”, Kim Parker and Eileen Patten state that “nearly half (47%) of adults in their 40s and 50s have a parent age 65 or older and are either raising a young child or financially supporting a grown child (age 18 or older). And about one-in-seven middle-aged adults (15%) is providing financial support to both an aging parent and a child.”

Many times, the burden of managing healthcare falls to a one person in the family who orchestrates care for their kids and their aging parents. Typically, this person is the mother of the children and daughter of the aging parents. Along with the burden of managing healthcare, this family member may also have a full-time job. Peter Kruger used the term Alpha Daughter in his publication, Alpha Moms, Alpha Daughters, and Mobile Health, to describe the mom who will be caring for her kids and parents and will use technology to organize and deliver those services. The burden placed on this individual is significant when the patient cannot make their own healthcare decisions or manage their own care. The toll can be increased stress and even depression, as this care eats into the caregiver’s time to take care of themselves.

More and More Specialized

The ability to receive care outside the traditional healthcare venues of a doctor’s clinic and the hospital has increased. Telehealth and home health options come to the patient.  Urgent care, skilled nursing facilities (SNFs), and ambulatory surgical centers (ASCs) are alternatives to the emergency room and hospital stays. The healthcare industry has been creative in aligning the level and cost of care to the urgency and severity. But with the additional specialization, there are more entities involved and requiring coordination.

Physicians are also more specialized as more choose specific areas of practice instead of family medicine. The total number of clinicians and administrators involved in the care therefore increase. The time requirements placed on the typical family doctor do not allow for adequate orchestration between all these clinicians, especially with the elderly patients. Non-clinical caregivers are also common with patients with debilitating chronic conditions and coordination with these caregivers usually falls to the family. All this specialization drives the requirements and demands for coordination of care higher.

Team Approach to Healthcare

While handling the patient’s daily needs, the patient or caregiver tracks and coordinates the care between clinicians and often provides the health information which did not move between these clinicians. For the sicker patients, it is in the best interest of both the healthcare providers and the family to take a team based approach to healthcare. The clinical team needs to coordinate and share health information, care plans, and insights. At the same time the family needs to receive information and coordinate with this clinical team and the other caregivers involved. In this way, the family and caregivers surround and support the patient allowing the clinical team to deliver better care and improve the health of the patient.

Orchestrating Consumer Centric Care

To aid in orchestrating care, the patient and their health information need to be readily available to the clinical team and the patient’s support system. If the patient, their families, and caregivers have access to the patient information and the consumer/patient is the focal point for the health and wellness decisions, then we have arrived at what Healthscient calls Consumer Centric Care. As consumers gain more insight into their healthcare and the healthcare of the family members that they care for, the consumer understands that the coordination of care is a challenge that the consumer must embrace. Having the health information and tools to coordinate with the patient, clinicians, caregivers and family members becomes important to ensure care and orchestrate across all the entities involved. The patient support system must communicate effectively between each other and members of the clinical team.

Technology Reduces Distance and Delays

Although government regulations have impeded as much as improved the flow of information between clinicians and patients’ support system, the technology advancements and increases in investment in new telehealth solutions provide hope. In the near future, the desired improvements in communications and interoperability will be achieved or significant progress accomplished. Ever since the telegraph, technology has been enabling remote interactions and improving the ability to communicate, coordinate, and interact at a distance. Distance matters very little, whether a few miles or a thousand, if the technology is available to provide the connection. Overcoming the security requirements and cumbersome interfaces may be a bigger issue for increasing adoption than the underlying technology.

Triage, Education, & Telehealth

As the United States moves forward in embracing telehealth between the patient and the physician, Healthscient believes that the ability to interact with health information about a patient’s care should expand to encompass the whole clinical team and patient’s support system. The access to vetted medical information and ability to triage issues is extremely valuable to the patient’s family and caregivers. Sharing of patient information between authorized family members and caregivers becomes as important as between the patient and physician. Facilitating the collaboration of the patient’s entire team, both clinicians and family, becomes a path to improving care and reducing the burden of caring for our family members needing the most help.

Expansion of Low Cost Diagnostic Solutions

In the next article, “Expansion of Low Cost Diagnostic Solutions”, the focus will turn to the technology trends that will fundamentally change the accuracy, availability, and cost of diagnosis and care. You can find all the published articles at “Articles and Essays”.




by Matt Larsen, Principal, Healthscient

LinkedIn: Matt Larsen
Twitter: @matthewrlarsen

Published on August 8, 2017

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