Partnerships with Patients

1. Partnerships with Patients Toto Gronlund Dr Claire Harris “Expert” Patients, Hadfield Medical Centre

2. Researching patients holding and checking their electronic records Claire Harris UMIST

3. Why bother? • NHS vision is to be patient centred • Major element of a patient centred service involves sharing more information with patients • One way to do this is through offering patients access to their electronic medical record • NHS strategy envisages access to electronic medical records • support access by patients to their own medical record • enable patients or service users to record their own information attached to their record

4. Benefits • Sharing electronic medical records with patients can: • support the development of a more open and honest relationship with the health care professional treating them (DoH, 2002) • break down barriers between patients and doctors (Liaw, Radford and Maddocks, 1998) • improve communication with health care professionals (Fisher & Britten, 1993)

5. Accuracy • The availability of high quality health information is also central to the current government’s strategy to reform the NHS and deliver a patient centred service • Are electronic medical records accurate? • General practitioners committee and DOH good practice guidelines for general practice electronic patient records suggests there may be errors such as: • erroneous diagnostic codes • missing or incomplete significant data

6. Evidence • Ward & Innes (2003) - 12/19 summaries changed due to errors. • Pyper, Amery, Watson, & Crook (2004) –70% of patients found at least one error or omission - 23% of patients found error or omission described as ‘important’. • Harris & Boaden (2003) –19% reported missing information, 15% reported errors.

7. How • Offering patients access to their electronic medical record can enable them to check the accuracy of their records (Booth, 2003) • But how can patients access and correct errors and omissions in their GP electronic health record ?

8. Project Objectives • 100 patients at two general practices based in the North West given a copy of their electronic GP medical record on floppy disk / CD rom. • Patients asked to check their record for errors and or missing information. • Patients asked to report accuracy of their electronic GP medical record back to their GP using secure e-mail system (GePMail) • Evaluate patients, support worker and GP experiences of the process.

9. Key Issues • How do you feel about the process of checking your record and communicating this to their doctor? • Could this process happen in your general practice? • How do you think the public in general will feel about this process? • What do you think will be the main implications for organisations?

10. PRIMIS Conference; 1st- 2nd March. Partnerships with Patients "How I use my Health Record" - Fred. Webber

11. When I first registered at the Hadfield Medical Centre • I now have full access to my medical records - in hard copy, on a floppy and on a CD • So, what are the benefits of holding one's own Medical Record and how do I use them?

12. 1. I use my records to be better prepared before consulting with the Doctor. • review a recent series of test results • are any trends to be seen? • I can enter into an informed discussion • I have the potential to gain more from the consultation

13. 2. I use my Health Records to be better informed. • Examine the additional entries • New entries are accurate and correct • Check my understanding of the conclusions • Matters of doubt can be noted and raised with the Doctor at the next visit.

14. 3. I use my Health Records to give me a degree of reassurance. • Problems requiring urgent attention do not always arise during the normal surgery hours • Can be made available to the visiting Doctor, • Judgments arrived at are likely to be better informed

15. 4. My Past Medical History can be rapidly transferred. • Available to the receiving Clinicians immediately • Medication and allergies, before reaching decisions about treatment • Past Medical History can be transferred without any delays

16. 5. I can use my Records as a form of travel insurance. • Access to my full personal medical history • Full background information for the Doctor • Health Records translated to some of the more widely used European languages

17. 6. I use my Health Records to enable me to take a more active role in decisions about my health and treatment. • enables me to be better informed • better enabled to play an active part in decisions • enter into an informed discussion with the Doctor • benefit to Clinician and Patient

18. To Summarise • I use my records to be better prepared before consulting with the Doctor. • I use my Health Records to be better informed. • I use my Health Records to give me a degree of reassurance. • My Past Medical History can be rapidly transferred. • I can use my Records as a form of travel insurance. • I use my Health Records to enable me to take a more active role in decisions about my health and treatment.

19. Patient AccessTo GP Retained Care RecordsJohn Hewitt Foldercare Health Services Ltd Foldercare

20. Information Strongholds Clinicians Patient ICT DOH NICE Admin Original Research

21. Government Foldercare / GePmail Administration (DOH) Medical Professional Administration (DOH) Government Patient Medical Professional Patient Communication Models Current Model (Patient perspective) Efficient Model for Inclusion

22. There must be a better way ? Give Patients Their Records

23. Patient Care Record (Torex) PRINT RECORD_DATE,CODE,VALUE1,VALUE2,TEXT FROM JOURNALS (ALL FOR PATIENT) WHERE NHS_NUMBER IN (“**********") *RSP_IDENT,HMC,Hadfield Medical Centre *RSP_AUTHR,USER1,Temporary HQL User *RSP_RDATE,20021017,17/10/2002 &0,"REPORT","1","0" &1,"RECORD_DATE","CODE","VALUE1","VALUE2","TEXT" $1,"20000628","-12","","","*PROMPT* Check family history" $1,"20000628","-136","","","*PROMPT* Ask about alcohol" $1,"20000628","-137","","","*PROMPT* Smoking history" $1,"20000628","-229","","","*PROMPT* Check height" $1,"20000628","-22A","","","*PROMPT* Check weight" $1,"20000628","-22K","","","*PROMPT* Calculate BMI" $1,"20000628","-246","","","*PROMPT* Blood Pressure Check" $1,"20000118","06..","","","Managerial occupations - ********. -" $1,"19950208","23..","","","Examn. of respiratory system - nad." $1,"19950208","2D..","","","Ear, nose + throat examination - nad." $1,"19990222","2DC1","","","O/E - pharynx hyperaemic" $1,"19990224","41B3","","","Faeces test due" $1,"19960124","652.","","","Typhoid vaccination typhim vi lo411 4.98 given" $1,"19960124","6564","","","Booster tetanus vaccination e54452u 97.01" $1,"19960124","6584","","","Booster polio vaccination s124j10 8.96" $1,"19960124","65C.","","","Yellow fever vaccination given" $1,"19960124","65FA","","","1st hepatitis A vaccination vha419b6 7.96 right" $1,"19951205","67E1","","","Recommend travel vaccinations, enquiry re" $1,"20021017","934Z","","","Computer record NOS-request" $1,"20000202","982A","","","Night visit claimable - higher"

24. Foldercare Is ……… • A browser-based viewer for displaying personal health data • Structured user friendly interface utilising all the patient data delivered from floppy disc or CD • A link to the internet for further information for a given disease, condition, treatment or drug. • Structured according to the World Health Organisation international classification of disease.

25. Data engines create many views of the patients’ data. • One engine displays the codes to mirror the structure of the Read coding hierarchy. • One engine creates “folder” or chapter views of the patient Read codes and text. Each “folder” is populated by codes from it’s own Read code chapter. Folders are designed to manage life long records and to aid “sealed envelope” use for purposes of confidentiality. • One engine creates a view of each chronological episode •  One engine creates a view of medications. • A linkage has been created between Read codes and web based information sources to explain data.

26. GePmail……… • Accessed by secure certificate requiring 128 bit encryption and 3 tier user identity • Communicate information in a secure environment with GP or other nominated health professional. (can be entered into the record by the GP under a “patient data” Read code providing 360 degree feedback) • After entering the required three numbers above the user can select the function required. The information is then sent to their GP and added to their personal record under a unique read code. • It is possible to add several packets of information and to review the data before finally submitting it to the GP.

27. Foldercare In Action • Selecting this link will require a 3 tier user check like that of GePmail • Users will then submit their record inserted in the floppy or CD drive at the client machine

28. FoldercareLogin • Login is a 3 tier process of identity codes. • Once logged in the session is time bound against non use. • Secure cache ensure users cannot short cut or bypass the login to access any part of the record.

29. The Contract When validated users are directed to the patient contract screen where they have a reminder of the contract they have signed prior to enrolment and are invited to confirm agreement. Failure to agree will bar access to their record through Foldercare.

30. Load Personal Data • Provide the location of your personal record. • This is the only time your data is perceived to be in a vulnerable environment. • It is uploaded using 128 bit SSL and destroyed when the session is ended or times out.

31. Selection and display • At the category selection page animated icons change from the category icon to the “invitation to view” icon and back again which indicates current conditions or issues. • Clicking on the desired icon will show the record detail for that disease category.

32. Internet Information When the patient displays information that he or she is not sure of the meaning or implications then using the Reference care module of the service a search can be initiated to resource supporting information

33. Ending the Web Session When users exit the health record viewer (log off) the session is terminated and the cache is purged of that session’s record data. No Patient data is retained by the server. At no time is any actual name or address stored on the server for access or logon purposes so no correlation can be made to a specific individual if data is in anyway compromised or rendered insecure.

34. The Future Foldercare Artificial data engines will seek out information from the patient’s information repository to populate empty fields within new or repeated clinical pathways. Data engines will match and link codes from the data repositories to codes attached to original research, local service provision information, local service outcome information and national or international standards, allowing patients to rapidly increase their own knowledge base.

35. Privacycare Privacycare is devised to aid the designers and users of electronic health records. Each structure, process and outcome of health and illness will have an electronic virtual equivalent, somewhere. Each equivalent will be selected and used within an E.H.R. Each will increasingly be selected to conform to a national or international standard. Privacycare is a pictorial representation of the foregoing as they relate to electronic health records. Component references or subtext may be attached to each icon to maintain and develop a chronicle of the changing structure of the record components.

36. Stepcare Stepcare is an embryonic lexicon of the generic processes of health and illness management. Each step will have components of information management. These may be executed face-to-face, by post, telephone, e-mail, Fax, telecommunication or by other means. Stepcare refers to the processes undertaken by patients, carers and professionals. It has been designed to aid the development of clinical care pathways. It makes special reference to the clinical consultation process and the electronic health record. It has not been peer reviewed and would benefit from further reference to academic models of consultations

37. Referencecare Referencecare is an early and simple linkage to portals of general health information. Users of electronic health records have the need to refer to information for explanation and expansion of the details within a record. It is hoped that linkage of the patient and general data may be by matching Read/SNOMED codes on the patient and general data.

38. Perceived Benefits / Potential savings Patient / user • Self help through interest and health education of individuals. • Ownership of medical conditions and treatment plans through increased knowledge and awareness. • Better relationship with health professionals. • Better use of consultation time. • Potential to reduce number of face-to-face consultations. • Portability of record and worldwide access to the Foldercare viewer from any web enabled computer (travelling). • Planning ahead for healthy living and lifestyle changes. • Reduced routine visits for regular measurements (blood pressure monitoring, blood sugar monitoring). • Correction / validation of GP held records.

39. Perceived Benefits / Potential savings Health provider / professional • Quality consultations through better informed patients. • Reduced number of cancelled consultations / no shows. • Positive patient attitude to advise / treatment plans. • Instant accesses to information for Locum or on call services. • Better treatment of “visiting” patients or emergency referrals (if the patient carries record).

40. Perceived Benefits / Potential savings Community • Cumulative savings due to more efficient processes. • More health conscious population developing a proactive plan for healthy lifestyle. • People with chronic disease adopting self help treatment plans.

41. CurrentActivities • Tameside and Glossop PCT are supporting the efforts of Foldercare and the associated culture changes. • Elderly patients in Waterside Nursing Home have recently been provided with a PC running Foldercare and each have requested and been supplied with their record on floppy disk. • Discussions through Tameside and Glossop PCT to provide patient access to care records to Market St. Practice in Hyde (Dr. Harold Shipman's ex practice). • Manor Surgery Glossop now enquiring about similar facilities for it’s patients.

42. Thank you John J. Hewitt