Patient Engagement

“Time Spent at Home” — A Patient-Defined Outcome

Article · April 26, 2016

As people reach the end of life, with a range of physical and cognitive problems, what medical outcomes can be used as measures of success? Improvements in life expectancy and reduction in mortality rate are measures that all health systems aspire to, and there is justifiable pride in the incredible advances over the last 150 years. The very elderly are increasingly common in every society. But having achieved longevity, what then?

We know that the goal of doing everything we can medically for the frail elder may have marginal benefits in terms of longevity and value to the patient. To focus our efforts in delivering high-value care at the Camden Clinical Commissioning Group (CCG), we asked elderly patients and their caregivers, “What is most important to you?”

When they told us, “time spent at home,” we designed care with that patient-defined goal in mind. That outcome — spending time at home, instead of in the hospital — became our system measure of success.

We found that focusing on a single, clearly understood goal — defined by patients and embraced by all involved in their care — created powerful clarity of purpose across a complex range of providers and organizations. Our experience shows the potential for a patient-defined outcome to drive the collaboration needed to integrate care.

Time Spent at Home: A Measure That Matters to Patients and Caregivers

The Camden CCG is charged with “buying” and managing health care services for the 250,000 residents in Camden borough in north central London, an area with both demographic and financial challenges. The number of residents over age 85 is estimated to rise by 35% between 2009–2017. People over age 70 (13% of the population) account for 56% of emergency admissions. As the CCG was being created in 2011–12, GPs increasingly found themselves caring for complex patients who shuttled between home and hospital.

In 2012, CCG leaders convened a workshop of elderly patients, family members, clinicians from community and hospital settings, social workers, and volunteer organizations that support the elderly. We encouraged people to put themselves forward and choose participants who represented a wide range of perspectives. With about 55 people in the room, we asked: “What is most important to you?” We compiled notes from table discussions into an Outcome Hierarchy, modeled after the work of Michael Porter.

“Time spent at home/not in the hospital” came out as the top priority — particularly among patients and families, who were adamant in this choice. We set out to design care around this goal and began to measure the results.

To devise the service model, we reconvened all Camden GP practices, representatives of care delivery services (acute, community, mental health, and social care), volunteer organizations, patients, and caregivers. This operational design group eventually became a steering group that continues to evaluate and improve the model.

A second group addressed the clinical governance involved in working across organizations — a particularly challenging issue, as appetite for clinical risk varies between community and hospital settings, and consistent prescribing and governance arrangements needed definition. Another  group addressed IT, first identifying what data needed to be captured and then creating the Camden Integrated Digital Record for sharing data (with patient consent) across health and social care.

Patient-Defined Outcomes: Directly Standardized Percentage of People Who Feel Supported to Manage Their Long-Term Condition - GP Patient Survey, Camden Clinical Commissioning Group

Support for long-term care. Click To Enlarge.

A Model That Empowers the Whole Team

The resulting model is straightforward: All parts of the health and social care system are encouraged to identify patients who are frail or pre-frail using a frailty tool or prior knowledge of the patient. These patients are placed on a register, and care plans are developed by a physician, the patient/family, and a senior community nurse. Each patient has a clearly identified care navigator.

Care is managed through a multi-disciplinary team (MDT). Less complex patients (typically, one chronic disease and a small risk of fall) are managed at the primary care practice, where a GP, lead nurse, and occupational therapist generally make up the MDT and meet monthly.

Often, more complex patients (many with behavioral health needs or dementia) are referred to a borough-wide MDT for care planning. Input is sought beforehand from the patient, the GP, and the family. This larger MDT meets weekly, led by a hospital geriatrician and a local GP. It includes lead nurses and MDs who specialize in geriatric mental health, chronic conditions, and palliative care; physiotherapists; social workers; pharmacists; hospital discharge coordinators; care navigators; and voluntary sector representatives.

The MDT approach, and the resulting culture change, have been among the most successful elements of the Frail and Elderly Programme. A particular strength of our MDTs is that all of the professionals involved now feel empowered to challenge each other, irrespective of role or organization. For example, it is not unusual now for a care navigator to challenge a hospital physician regarding keeping a patient unnecessarily in hospital. The team relationships have driven a culture of openness, trust, and respect for each others’ roles and responsibilities. We see these working relationships now extending beyond the frailty program, with professionals picking up the phone to discuss the needs of other patients.

Three key factors that may differentiate — and strengthen — our MDT teams include:

  • Working across a health and social care system rather than within one organization;
  • Focusing on a segmented population, not a disease pathway; and
  • Sharing clinical records and data.

Innovating around a core outcome has enabled all involved to change how they work together to prevent hospitalization and, when hospitalization is necessary, to get patients home faster.

Outcome Achieved: Preventing Hospitalization and Getting Patients Home Faster

A goal of “more time at home” may sound similar to the more conventional goal of “reduced hospitalizations.” We found two crucial differences: Among professionals, the “time at home” goal led to pro-active care planning. Among patients, acceptance was high because care reflected their preferences, instead of feeding concern that cost-cutting was driving decisions.

Since the service began in April 2013, 1,625 patients have been placed on the Frailty Register — about 13% of the over-75 population. We’ve seen decreased hospital use and increased patient engagement, further illustrated by the following:

  • Of the most complex patients, more than 70% achieved the goal, defined as remaining at home the same or more days during the six months after case management began than during the six months prior. This is a significant achievement given that the health status of this group would suggest a natural decline in function over the time of measurement.
  • Overall, 74% of registry patients have achieved the “time spent at home” goal. This has been done primarily by reducing emergency department visits (by 29%) and, when hospitalization is necessary, by managing patients back into the community more rapidly (15% reduction in emergency bed days), with resultant cost savings. (Initially, when most patients on the registry were extremely frail, we saw even greater reductions [40%] in admissions, emergency department visits, and overnight stays.)
  • Patient-reported outcomes and experience measures show 60% of respondents felt involved in decisions about their care plan, and 100% would recommend the care navigator part of the service to others.
  • Importantly, Camden showed improvement in the percentage of patients who say they feel supported to manage their long-term condition — exceeding the numbers elsewhere in London and bucking the national trend toward decline in this measure (See graph).

Measuring “Wellness” Rather Than Illness

Our efforts in Camden were strongly influenced by Porter and Thomas Lee’s work suggesting that an outcome defined by patients in itself could drive the integration of care, particularly if it requires a system approach across organizations. Our experience showed that enabling a segment of patients to define the outcome that is important to them, and then using that outcome as a measure of success, is a powerful step toward integrating care delivery.

We are particularly intrigued that this patient-defined metric of “time spent at home” actually measures wellness rather than ill health. We envision that similar initiatives could be used to measure “wellness” rather than “illness” in a range of chronic mental and physical illnesses and in palliative care. We challenge other organizations to consider “time spent at home” as a metric that represents value to patients, caregivers, and health systems.

 

Additional contributors include Lance Saker, MD; Stuart McKay-Thomas, MD; Dorothy Blundell; Charlotte Mullins; Camden Sustainable Insights team and Frailty Programme team.

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