Unleashing the caring potential of families: taking an innovation from India to the US

Two years ago I was fortunate enough to join a study visit to India. One of the many impressive examples of health care systems driven by the commitment to high quality care at the lowest cost possible was the Narayana Health Hospital in Bangalore. Its chief executive – Dr Devi Shetty – has been widely acclaimed for transforming the cost of delivering cardiac care. Alongside the rigorous drive towards standardisation and the economies of scale, one of the innovations which struck a chord with me was an initiative called Care Companion – started by some graduate students from Stanford University.

In rural India is it typical for families to travel and stay near the hospital during their relative’s treatment. The Care Companion programme took advantage of this to skill up the family to support the patient after discharge. With a mixture of some formal training and supervised practice on the wards, the family would return home feeling more confident to provide the right support to their loved one. In a system where there are no community-based services and follow-up is the exception rather than the norm, this intervention delivered some impressive results.

It seemed such a simple idea that those of us on the study visit all wondered why we didn’t provide greater support to families to manage care post-discharge in the NHS. It’s often the anxiety of family members that will lead to out-of-hours calls and A&E visits. By building their confidence through some formal training, wouldn’t this be in everyone’s interests?

So last week I was excited to meet Katy Ashe, one of the Stanford students behind the original design of the Care Companion Programme. The programme has been so successful that Katy and her three co-founders have now established their own non-profit, Noora Health, which has trained 15,000 families across 16 hospitals in India and the US. I was particularly interested to find that they had been testing the model in two departments at Stanford Hospital. Was this going to be an example of so-called 'reverse innovation'?

Katy started by explaining the genesis of the model. They had gone to Narayana with the intention of helping improve patient flow. By taking a human-centred design approach they sought to understand what was behind the long lengths of stay. Interestingly, they found that a significant factor was the patients’ and their families’ fear of being discharged.

Katy and her colleagues studied the discharge process. There would be a short briefing from a nurse or doctor, but there was no culture of questioning clinicians, so many would leave not understanding what was expected of them. Although they would be given some written information, the majority of the families were semi-illiterate or illiterate, and so those materials didn’t help much either.

Despite staying on or near the hospital during the inpatient stay, the family would only have one hour of visiting time per day. It struck the Noora co-founders that the family – sat on the hospital premises – was a hugely under-utilised asset and the idea emerged to offer them some training. 

The training programme takes place over two one-hour sessions. The families are trained in 12 skills for post-surgical care, from personal care to rehabilitation exercises, and then help alongside the nursing staff on the ward, building their own confidence in caring.

In a sample size of 100 patients, the Stanford team found increased satisfaction ratings and perceptions of the quality of care. There was a 24% reduction in readmissions and 36% reduction in complications after 30 days. A larger study of the programme with 215 patients in Kolkata, conducted by a Stanford research team, will be out this spring.

So what did they find when they brought this approach back to the US? Taking the human-centred design approach meant that they didn’t simply lift and drop the model that had been developed for Narayana Health. They were successful in getting a grant and, sticking to the principle of skilling up family members, they used human-centred design to explore how best to approach two clinical areas: vascular surgery and heart failure.

A striking find was that whereas in Bangalore families had been hungry for information and training, in the US people didn’t have the same commitment to learning – and often didn’t accept they had a need to learn! In addition, family members in Stanford were more likely to be living further away and not necessarily present at the hospital because of work or other commitments. Katy and the team adapted their approach and developed a tablet-based training programme using gaming techniques, interactive video, quizzes and scenarios to help people learn how to recognise warning signs, how to respond, when to call a doctor, and so on.

In the current age of ‘mass distraction’ they found they had to keep the teaching components short – nothing lasts more than 20 seconds. They also found that often people had to be proved wrong first to then be receptive to learning.

So far 100 families in the US have received the training and the evaluation from the test phase will be available in the next few months. Katy has some caution in what the results will find. The US context has been very different. But she has been struck that although people are often pretty bad at taking care of themselves – which in itself is often a factor behind the patients’ conditions – they are pretty good at looking after other people. It will be interesting to see whether the US study can point to similar results, in which case it may be that we should all be thinking of not just patients as renewable assets of health care, but their families as well.

Jo is Director of Strategy at the Health Foundation, www.twitter.com/JoBibbyTHF