“Data is an underutilized asset,” said Dr. Thomas Lee, Chief Medical Officer at Press Ganey, referring specifically to information incorporating key insights gleamed directly from patients and caregivers. These insights often highlight gaps in care where patients and caregivers needs are unmet and can be used to develop, refine and then apply new solutions.
Canada's Saint Elizabeth, a national provider of home nursing and rehabilitation care, took this data driven approach when they developed and refined a new set of virtual services aimed at family caregivers. The services along with a new website were branded as Elizz and launched nationally in October 2015.
The organization, which does about 18,000 home visits a day, saw an unaddressed need: family members or friends who were voluntarily providing home-based care were often forgotten and struggling. This uncompensated "workforce" is key to successful paid home care services because they ensure patients are well attended to when professionals and aids are not on site.
In many cases, caring for a sick relative or friend lead to a decline in the caregiver's physical health. Others found themselves socially isolated and financially drained. There are support services available to caregiver, but few caregivers used them, suggesting either the content of the programs didn't match their underlying needs or they were unaware they existed in the first place.
“There was a real aha moment. This was a group in real need of assistance and we decided to go after the care giving market,” said Allyson Kinsley, an executive at Elizz, who helped develop the virtual product.
St. Elizabeth had already been studying gaps in caregiver services. In 2011, it along with Echo, an agency within Canada's Ministry of Health and Long Term Care, funded a major research initiative to better understand what makes caregiver support and education effective.
The study involved reviewing hundreds of academic papers and interviewing caregivers and providers. It found the predominant method of care for caregivers focused on detecting and treating depression and anxiety.
But caregivers wanted more proactive help. The study went on to identify five promising practices:
Respond to the unique care situation: Traditionally caregivers were asked about their symptoms, not their needs, and important factors, like care givers' relationship to the patient or family and gender dynamics were rarely considered.
Stimulate caregivers involvement and interest: to move beyond providing one-way information, providers needed to foster networks among caregivers, connect them with community services and offer interactive help online.
Address the emotional context of providing care: Encouraging caregivers to take time for themselves could reaffirm caregivers' competence and confidence; and separate their achievements from the progression of the family members' disease. both were key to reducing caregivers' psychological toll.
Provide relevant information: These should include a guide to the health system or practical strategies for caring, like how to provide assistance with showering or toileting; and
Enable caregiver participation: Recognize the barriers preventing participation; arrange for respite (someone else to care for the patient) or provide transportation.
Another key insight from the study was that caregivers, in hindsight, wished they had assistance earlier, when they had just begun providing care. Emotional support and resources to help make their job more manageable could prevent burnout in the first place.
“It's like a frog in boiling water,” said Madonna Gallo, head of public voice at Saint Elizabeth and Elizz. Caregivers often find themselves overwhelmed because of competing demands like work and continuing to meet the needs of other family members.
A new website was created, offering a half dozen virtual products. They included a virtual coach, usually a trained nurse available 24 hours a day for a 45-minute session; a chat room or peer online support forum where caregiver could share stories with others going through the same experience; a database of local support services; a self-evaluation, showing what services might be useful for them; and over a hundred articles offering expert advice on how to deal with specific conditions or challenges.
Some of the products, like the articles, are free. Others, like the virtual sessions, charge a fee. All the virtual products were branded as Elizz.
Months before launching the service, they offered Elizz to select homecare clients who they thought could benefit from the service. The idea was to test it on a small scale before rolling it out more broadly. At this stage if a certain aspect of the product did not work as anticipated it could be corrected or modified without much fuss. And that is exactly what happened when the Elizz team made a surprising discovery.
Many caregivers did not identify as caregivers. This was especially true for those that had just taken on care giving responsibilities and were only spending several hours a week in the role. These were the exact people Elizz was trying to reach.
The earlier research defined five stages of caregiving: helping (one to ten hours a week); involved (ten to 20 hours a week); intensive (20 to 40 hours a week); all encompassing (50 plus hours a week); and closing (when a patient is independent, placed in a long-term care facility or dead).
If a person is spending more than 21 hours a week on caregiving, the odds of distress are two-and-half times greater, according to the Canadian Institute for Health Information. Elizz's target audience fell right below that threshold. At the involved stage, caregiving responsibilities tend to increase from helping provide transportation and running errands to bathing, dressing and managing medications and treatments.
To reach their target audience, Elizz realized that its communication strategy for the products launch would have to define the role of caregiver for the general public. It promoted its five stages of caregiving model. It also ran sponsored series of articles on caregiving in the Toronto Star and was able to showcase its launch on CTV news. One of its morning anchors Lainey Lui was a caregiver to her mother and she shared her story on the news show Canada AM.
Elizz also hired Christopher Wahl, an American-Canadian photographer renowned for having photographed the English Royal family and The Rolling Stones, for a campaign called the “Faces of Caregiving.” The idea was that by photographing caregivers and their families, people would begin identifying with the role. The pictures were shown in an art gallery in Toronto and used as part of the larger communications strategy.
With the results from the pilot in hand and a communication strategy in place to address the identity issue, Elizz was ready to launch nationally. The fast pace of deployment is in line with the organization's culture and motto “research on the run.”
Today, 75,000 caregivers visit Elizz's site each month and over 10,000 have completed assessments online, said Gallo. Veterans Affairs Canada is also using Elizz to help it offer online caregiving education and training.
“Even though we are making strides, it takes a while to shift the mindset and get people to self-identify and take action to prepare for caregiving earlier,” she said.
Part 3 of Scaling Up will look at 'Run, run, jump,' Dignity Health's solution for scaling innovation.
Lisa Ward is a freelance writer based in Mendham, N.J.