It has become obvious that to improve the health of individuals and populations, it is critical to include the key stakeholder: the patient and their family. Many institutions are putting significant effort into implementing technology that will engage the patient and their family in maintaining a healthy lifestyle as well as complying with medical advice related to treating their chronic illness. Is this also a critical element of compliance with the long-term plan of care for more acute illnesses? At St. Jude Children’s Research Hospital, patients and families are on a several year journey; moving from an acute cancer diagnosis to long term remission with periodic follow-up. Do patients and their families receiving this specialized type of care also need tools to remain engaged?
Being diagnosed with a life threating disease typically predisposes one to become engaged in their treatment plan, especially when the patient is a child. In the short term, incentive is ever present, but just like people who are struggling to incorporate healthy lifestyle changes, it becomes difficult for some of our patients to stay focused on maintaining health. For most patients and families it is also difficult to devote the required time and money to stay on course, which are the same barriers that face those managing the “typical” chronic illness. Remission and the end of treatment for cancer are only the first steps to a long-term follow up. Children treated for cancer frequently have a lifetime predisposition for chronic cardiac, respiratory and other diseases. This makes their healthcare needs similar to those facing chronic illness, requiring significant management, even after the critical nature of the disease of cancer has moved to the background.
Even though our patient population is very specific, the challenges they face are not so unique. Their opinions and perspectives about the tools they interact with may represent that of the general patient populations. We asked patients’ parents if any specific technology being offered was helpful in keeping up with the care needs of their child, and if there was any specific technology that they would like to have for the same purpose. These were informal questions posted on our family e-Council website, a tool we utilize that allows our families from across the country and around the world to participate in decisions that affect care at our facility, and answered by a few families.
Overwhelmingly, the families cited our patient portal as the key technology tool that has helped them remain engaged in their care, specifically citing the ability to track their appointments and request changes to their schedules. In response to tools that they would like to see, there were a lot of suggestions. Our patient families would be interested in tools that share onsite patient events and activities, making these available on their mobile devices. They want to be alerted to schedule changes, receive real-time prompts when they are at Outpatient visits, ability to track test results and a resource for information and medical terms that they can rely on. They want a tool to plan their medication schedule and text reminders when their next medication is due. They want the patient portal to provide their whole medical record including pathology and diagnostic imaging results. This last request was cited several times with one family stating when you are in the “cancer world…this alone could give us as parents a sense of control over what is happening to our children. It would help us process everything that is happening because it would be there right in front of our faces to read once the shock has worn off.” This perception is very enlightening in a culture where many clinicians believe they must review and interpret this potentially scary information before the family has access to it on a portal.
The patient population we care for is likely representative of the general population of healthcare consumers. Their desire is to have more real-time information, easily accessible and the ability to explore their health status as well as the disease processes they are dealing with. It seems that although the type of care we provide at our institution is very unique, there are quite a few similarities to all patients as well. For all healthcare providers, including those of us who work with the informatics aspects of healthcare, it is critical that we hear what our patients are saying.
About the Contributor
Tina Dieckhaus is the Director of Patient Care Services Informatics at St. Jude Children’s Research Hospital and has worked in an informatics role at St. Jude since March 2000. She has a BSN from Mississippi University for Women and her MSN in Nursing Informatics from Tennessee State University. She has been practicing as an informatics nurse since 1997 and holds ANCC certifications both in Informatics and Nurse Executive. She has been a member of HIMSS since 2004 and obtained her CPHIMS certification in 2008.