Ambrose T, Topan R, Small M, et al
PTH-133 Electronic Personal Health Records For Patients On Home Parenteral Nutrition: A Patient Satisfaction Survey
Gut 2014;63:A270.

Electronic personal health records for patients on home parenteral nutrition: A patient satisfaction survey
Tim Ambrose 1,*Rabia Topan 2Mia Small 1Jeremy M. Nightingale 1Simon M. Gabe 1
1Lennard Jones Intestinal Failure Unit, St Mark's Hospital, 2Northwick Park Hospital, London, United Kingdom 

Introduction: The public demand for flexible access to health information & services is growing, encouraged by Internet trends and policies promoting patient involvement. Patients Know Best® (PKB) is an electronic patient centred system providing a secure forum for patients to interact with healthcare teams. With increasing use of this system by our home parenteral nutrition patients we aimed to assess patient satisfaction with a survey.

Methods: PKB was introduced to patients during routine clinic visits and verbal consent obtained. We recorded the frequency of use, total number of electronic discussions held & the number of additional carers (other healthcare staff or family members) involved in their personal health record. We distributed a 10 question survey to all users.

Results: 119 patients (50 male, 69 female) were registered over a period of 18 months with a median age of 49 years (range 17-85 years, mean 48 years). A total of 5015 unique electronic conversations were recorded. These would usually have occurred via telephone. PKB has been used for 4 patients transitioning from paediatric to adult services & 2 patients from abroad. Other patients invited included 128 outside clinicians (eg local nutrition nurses & dietitians, transplant coordinators) & 29 carers. There were 58/119 (48.7%) responses including 1 incomplete dataset (61% female). 31/57 patients (54.4%) were over 50 years of age. 42/57 (73.7%) received parenteral nutrition & 13/57 (22.8%) fluids and electrolytes. 51/58 (87.9%) patients felt at least “somewhat confident” working online with their healthcare team and the same number felt that having access to the results was at least “somewhat helpful” – 32 (62.7%) of these responding “very/extremely helpful”. 30/58 (51.7%) use PKB a few times a month, 4/58 (6.9%) a few times a week and the remainder less frequently. The more useful features of PKB included Discussions (ie contacting the St Mark’s Nutrition team electronically) and Monitoring (ie test results). Patients use PKB to contact doctors/nutrition nurses more than dietitians/administrators.

Conclusion: Our survey suggests that our patient cohort find this a useful facility to contact us and improve the management of their long-term conditions. Not all patients access PKB regularly and they only had a short period in which to respond to the survey. This may explain the 49% response rate in an otherwise motivated patient population. This is an emerging and effective way for patients to interact with their healthcare teams and we have not found it has increased our workload. The ability to communicate seamlessly between different healthcare professionals reduces the current difficulties which exist when transferring information between multiple care providers (eg HIFNET). 

Disclosure of Interest: None declared