This document reports on a survey of patients using an electronic patient health record system called Patients Know Best (PKB). 119 patients with home parenteral nutrition were recruited over 18 months to use PKB. A survey of 58 users found high satisfaction, with most finding PKB useful for contacting nurses, doctors, and dietitians. The survey results suggest patients find PKB a useful tool for managing their long-term condition and improving communication between their healthcare team.

1. Electronic personal health records for patients on home parenteral
nutrition: A patient satisfaction survey
Tim Ambrose1, Rabia Topan2, Mia Small1, Jeremy MD Nightingale1, Simon M Gabe1
1Lennard-Jones Intestinal Failure Unit, St Mark’s Hospital, London, United Kingdom 2Northwick Park Hospital, London, United Kingdom
Introduction
The public demand for flexible access to health information
& services is growing, encouraged by internet trends &
policies promoting patient involvement. Patients Know Best®
(PKB) is an electronic patient centred system providing a
secure forum for patients to interact with their healthcare
teams.
Aim
To assess satisfaction with PKB amongst our cohort of home
parenteral nutrition patients.
Method
Survey results
PKB was introduced to patients during routine clinic visits and
verbal consent obtained. We recorded frequency of use,
number of conversations held, and additional carers invited.
A 10-question survey was distributed to all users to assess
satisfaction with PKB.
Demographics of patients using PKB
119 patients recruited over 18 months (50 male, 69 female).
Median age 48 years (range 17-85).
5015 unique conversations held.
128 additional healthcare professionals and 29 carers were
added by patients.
Survey respondents
58/119 (48.7%*) responded to the survey with 1 incomplete
dataset. 61% female, 54.4% over 50 years of age.
42/57 (73.7%) parenteral nutrition; 13/57 (22.8%) fluids with
electrolytes; 2/57 (3.5%) no parenteral support.
*Not all patients access PKB regularly and they only had a short period
in which to reply to the survey which may explain the low response
rates in an otherwise motivated patient population.
Conclusions
How often do you use Patients Know
4
30
20
4
A few times
a week
Best?
A few times
a month
A few times
a year
Less
frequently
Has Patients Know Best helped you
29
to contact...?
36
21
10
Nurses Doctors Dietitians Other
How satisfied are you with Patients
24
Know Best?
19
10
3
35
30
25
20
15
10
5
0
40
30
20
10
0
30
25
20
15
10
5
0
Very Somewhat A little Not at all
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
How useful do you find each of the Patients
Know Best features?
Never used
Not at all
Moderately
Extremely
How helpful do you think having access to your
results is in helping you improve the way you
5
manage your condition?
10 9
17
15
Not at all
helpful
Not really
helpful
Somewhat
helpful
Helpful Very helpful Extremely
helpful
How likely are you to recommend this product to
2
19
16
someone you know?
13
7
3
20
15
10
5
0
20
15
10
5
0
Extremely
likely
Very likely Moderately
likely
Slightly likely Not at all likely
This survey suggests that our patient cohort find PKB a useful facility to contact us and improve the management of their long-term condition.
This is an emerging & effective way for patients to interact with their health care teams. We have not found it has increased our workload.
The ability to communicate seamlessly between different healthcare specialists reduces the current difficulties which exist when transferring information between multiple
care providers and may be useful for HIFNET.