Article contributed by Carla Smith, Executive Vice President of The Healthcare Information and Management Systems Society (HIMSS) for PharmaBoardroom.
We must assertively bend the arc of technology towards our patients, clinicians, researchers, and caregivers, and re-humanise the health system.
One of the many ways patients are de-humanized in a health system is entering into a facility for treatment. As is standard procedure, patients must wear a wristband with a barcode. And, patients must change out of their street clothes into hospital gowns. Both examples exist for cogent reasons, such as ensuring clinical staff can match a patient with his/her electronic health record, or ensure the administration of the right medication at the right time. However, simultaneously such practices serve to (inadvertently) erase who we are and make us part of an impersonal assembly line that is, too often, a patient’s encounter with a health system.
Several years ago, at Jewish General Hospital in Montreal Quebec, Dr Alexandra Greenhill changed the world for her oncology patients. As is the case for many oncology patients, Dr Greenhill’s patients often lost their hair in the course of their treatments. And, at Jewish General, some of her older patients were Holocaust survivors.
When these patients needed treatment, the hospital’s staff would follow standard procedure – put a wristband on each patient, and ask them to put on a hospital gown. As a result, such patients were not only bald but now numbered and uniformed as well. While these procedures made sense from the hospital’s point of view, it would literally result in some of Dr Greenhill’s patients being so traumatized they would experience psychotic breaks. Which, of course, terrified the patient and the patient’s family, and horrified her. In speaking with the staff around her, all agreed that the situation (which is now part of the normal procedure) was terrible.
Dr Greenhill objected. While the terrible situation might be usual, it was anything but normal. She rallied the rabbis, priest, imam, and Chief Nursing Officer to champion a new standard of practice for Jewish General Hospital: oncology patients were given the choice of changing into a hospital gown, or remaining in their street clothes. That one change made all the difference. Because Dr Greenhill’s Holocaust-surviving patients could retain their identity through their clothing choices, they were no longer driven to psychosis and could engage rationally in their oncology treatments.
We’ve been on a long journey back towards patient-centred care. Beginning in the mid-19th century, healthcare embraced many exciting scientific discoveries such as public health statistics and the professionalization of the nursing profession (both created thanks to the innovations of Florence Nightingale), germ theory, and many others.
While transformational to the status of human health, and positive in many ways, our 100+ year arc towards technology had a dark side. As health professionals, we embraced high-tech and went low-touch: our patients not only wore hospital gowns as a uniform, our patients became uni-form and remained un-informed.
Fortunately for us all, this provider-centric paradigm began to change in the latter part of the 20th century. In 1987, the Picker Institute, in partnership with the Commonwealth Fund, coined the term “patient-centred care” and published eight principles:
- Respect for patients’ values, preferences and expressed needs
- Coordination and integration of care
- Information, communication and education
- Physical comfort
- Emotional support and alleviation of fear and anxiety
- Involvement of family and friends
- Continuity and transition
- Access to care
In 1998, Valerie Billingham, an attendee in a Salzburg Austria Global Summit session about collaboration between patients and care providers, said that it seemed to all boil down to one phrase: “Nothing About Me Without Me”. This has become embedded in many aspects of our health system; an oft-repeated phrase centring health professionals around the work we do.
In 2010, Regina Holliday started the Walking Gallery, in which she paints a person’s personal health story onto the back of their business suit. People wear their painted business suits at health events and meetings to convey their commitment to person-centred health.
And, in 2017, HIMSS brought the UK-based Kate Granger Award to North America, honouring ambitious and innovative ways of delivering care that embrace a high-touch/high-tech approach. Awardees must demonstrate how high-touch, high-tech care makes a difference, is measurable, and replicable.
Information technology (IT) can and has transformed peoples’ health, and the way care is delivered. Effective use of digital health creates access to care for marginalized patients, increases the safety and quality of care delivered through evidence-based electronic clinical decision support, provides greater public and population health through analysis of health data, big data analytics make game-changing medical research possible, and it can change the arc of the cost of care.
We must assertively bend the arc of technology towards our patients, clinicians, researchers, and caregivers, and re-humanize the health system. We must continue on our journey of putting patients at the centre of all health-related discussions. Effective use of IT has tremendous power; person-centric health leaders must be in the driver’s seat to ensure it is harnessed for the power of good.
Follow Carla on Twitter @CarlaMSmith