BCS ASSIST Autumn Conference, Manchester 10 th October 2012

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1 BCS ASSIST Autumn Conference, Manchester 10 th October 2012 Lisa Brady, Head of Health Informatics University Hospitals Birmingham NHS Foundation Trust

2 Presentation Background & overview of System functionality Experience to date Next steps Lessons learnt Questions & comments

3 Overview of A web-based system offering high-quality information & support to Queen Elizabeth Hospital Birmingham (QEHB) patients with long-term health conditions, to enable informed choice & shared decision-making. Allows patients to: access information held in their QEHB clinical record; store their health records in one place & share with their clinicians; create their own support networks of patients with similar conditions; & access reliable information & resources on their condition.

4 NHS context The recent White Paper acknowledges the need to: transform the way information is accessed, collected, analysed and used by the NHS so that people are at the heart... move towards facilitating openness and transparency; to enable patients to be in control of and active participants in their care. The shared vision set out in [the DH Information] strategy is for all of us to have secure electronic access to services and to our own health and care records. This will include access to letters, test results, personal care plans and needs assessments.

5 System development Developed by QEHB IT & informatics staff, in close consultation with clinicians & patients. Web-based portal + underlying data warehouse built & maintained in-house, along with provision of support for patients & staff Servers & data housed onsite Data feeds taken real-time, electronically from Trust s clinical portal (EPR) ethical hacking / security tested & verify by external company of expert consultants.

6 Pilot & further development Pilot commenced with liver medicine patients in Feedback suggests the system gives patients: more control over their care improves their experience makes their life much easier Road-testing undertaken with patients from wider range of specialties, ages & computer skills. Responses positive; majority of patients found it relatively easy to navigate & understand all but 1 signed-up to use.

7 Road-testing feedback Very good, & very helpful what I ve wanted for years. perfect for me I ve recently moved away to university; all my mail still goes to mums, & she s always been very involved [in the management of] my condition... I think this will help me make sure I don t miss any appointments & become more involved in understanding & managing my condition.

8 Key system functionality

9 Secure registration process & log-in:

10 Home page:

11 Results:

12 Medications:

13 Letters:

14 Contact QEHB (clinicians):

15 Profile / Support Network:

16 Key system functionality (cont.)

17 Implementation Went live on 31 st July 2012 in the following specialties: Cancer Diabetes Endocrinology Respiratory Inherited bone conditions HIV Liver medicine Renal Haematology Rheumatology Inherited metabolic disorders Gradual roll-out planned

18 Early feedback & uptake Currently over 200 patients signed up; many used the system multiple times last month. Haematology consultant: I didn t realise it would be so simple [to sign-up patients]. Rheumatology patient: my clinician has asked me to enter BP readings at home & upload my GP prescriptions so we can find the best medication plan [for my condition]. Service evaluation to be conducted 6 months postimplementation by NHS Kidney Care.

19 Next steps / future directions Additional functionality identified for future releases e.g. PROMs & patient experience questionnaires. More specialties / sub-specialties keen to be involved. Applying for NIHR Research Grants to assess impact on patient outcomes & experience. Potential to investigate, pilot & evaluate new ways of delivering care to patients in the future e.g. communicating & sharing info with clinical team or virtual clinics via the system could replace/reduce no. of face-to-face appointments & prevent several hours traveling to QEHB for some.

20 Lessons learnt Represents cultural change for many clinicians. Shift in mind-set required often more difficult to manage than IT requirements. Clinical leadership & executive sponsorship is vital. Electronic storage & management of health information essential. Overall, positively received by patients & clinicians.

21 Any questions or comments...? Thank you!

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