Dementia data harmonisation: South of England Protocol Background 1. In 2013 an aspiration was agreed between the Department of Health and the new-look NHS England that by 2015 two-thirds of people with dementia will have a formal diagnosis. 1.1. Diagnosis rates of 66.6% are another way of expressing this aspiration, diagnosis rates being a ratio of the number of people with a diagnosis as recorded on General Practice Quality & Outcome Framework dementia registers (numerator) and the total number of people believed to have dementia in the same population (denominator) using agreed Delphi Consensus age and sex band prevalence figures. 1.2. Despite increases in diagnosis rates in most CCG areas since 2013, many areas have diagnosis rates which fall far short of this aspiration for next year. The overall diagnosis rate for NHS England (South) was 47.7% in April 2014 and 49.9% in August 2014. 2. Therefore a concerted effort to increase dementia diagnosis rates by 2015 has been requested by the Department of Health and NHS England of all CCGs in England and their constituent General Practices. 3. Two specific projects in each CCG area have evidence of being likely to increase diagnosis rates beyond the expected annual rise and within the tight timescale available: 3.1. Data harmonisation. This is work to ensure that GP QOF registers accurately reflect the total number of people who have been diagnosed as having dementia in their populations. 3.2. Care Home case-finding. 4. Data harmonisation has been shown to result in an average 8% rise in actual diagnosis rate figures for dementia in an NHS London study. Pilot projects in three GP Surgeries in West Yorkshire & Humber region, total Practice population 23,000 patients, found increases of up to 17% in actual diagnosis rate figures (rising from 38.8% to 55.8%). 4.1. No new diagnoses have to be made to undertake most of this project: it is simply making sure that those already diagnosed have an appropriate Read Code in their GP clinical record so they appear in QOF register data. 4.2. Much of this project may be undertaken by GP administration staff or CCG Medicines Optimisation staff. Access to the GP clinical computer system is a prerequisite. Data Harmonisation protocol 1. The CCG or Area Team requests a list of patients diagnosed with dementia from their local Memory Clinic provider. The list should identify each patient by NHS number and be divided by which Practice each patient was registered at when the diagnosis was made and given to the patient. 1.1. Some Memory Clinic providers (e.g. Berkshire Healthcare NHS Foundation Trust) already provide this data annually. Others (e.g. Devon Partnership NHS Trust) have Data Harmonisation Protocol NHSE (South) 1
been able to generate this data within a short time-frame using their clinical system (RiO) upon request from local CCG Dementia clinical leads. 2. A search should be set up on the GP clinical computer system (see appendix 3) to identify patients as follows: 2.1. Do not already appear on the GP QOF register; and 2.2. Being prescribed acetylcholinesterase inhibitor medication; and/or 2.3. Having a cognitive or memory loss Read Code which suggests the presence of dementia (see appendix). 3. Patients on the Memory Clinic list (step 1 above) but not on the GP QOF register should be added to the register by adding a suitable Read Code (see appendix 2) to the patient s clinical record, where possible back-dating the date of the code to the date of diagnosis. 4. Run the search set up in step 2. Patients added in step 3 will now be excluded because they now appear on the QOF register. 5. Undertake a clinical record review of patients produced in the search, and if any have evidence of a dementia diagnosis already being made add a suitable Read Code to the patients record so they now appear in the QOF register (see appendix 2). 6. Any remaining patients should be considered for a face to face review of their cognitive state and general health. Cognitive and/or functional impairments may have progressed since they were last assessed and dementia may now be more likely. Many of these patients will be eligible for assessment under the Dementia Direct Enhanced Service to provide additional financial support for GPs or Practice Staff undertaking assessments. Data Harmonisation Toolkit The Strategic Clinical Network for Yorkshire & Humber, in association with local Commissioning Support Units, have developed a Toolkit to support this process which includes ready-to-roll searches for GPs who use SystmOne and EMISweb clinical computer systems. Further searches are in development for Microtest, InPS Vision, EMIS LV and EMIS PCS systems and should be available in that region by early November 2014. CCGs or CSUs in the South of England interested in adopting this Toolkit for local use are advised to contact Dr Nick Cartmell, Clinical Lead at the Intensive Support Team for Dementia at NHS England, who will arrange necessary communications with Yorks & Humber SCN and sharing of computer system searches (non-readable files). Financial support for data harmonisation NHSE has identified specific funding for CCGs and/or GPs to undertake a data harmonisation project in the South of England. This funding will be allocated by Area Teams shortly, with priority given to CCGs and General Practices within them in the lowest quartile of diagnosis rates according to HSCIC August 2014 data. Data Harmonisation Protocol NHSE (South) 2
In areas where data harmonisation has already been undertaken, it is expected that those CCGs will ensure that all of the steps of this protocol have been completed and if not that steps not yet completed are undertaken. The intention of this protocol and the available financial support is to ensure that by the end of the 2014-15 financial year full data harmonisation will have been undertaken in all 50 CCGs in the South of England, whether as a specific NHSE-funded project or as part of existing CCG commissioning strategy. Reporting requirements NHS England (South), through Area Teams, will require the following data from CCGs by the end of March 2015 or the completion of their projects (whichever is the sooner): What format the chosen data harmonisation will take (it is preferable that the above protocol is adopted in its entirety); Between which dates the data harmonisation protocol will take place; How many patients have been added to GP QOF registers as a direct result of data harmonisation. NHS England (South) will also analyse monthly HSCIC diagnosis rate data by CCG to assess any impact the data harmonisation projects have had. It is intended that reporting requirements are kept to a minimum to allow CCGs the freedom to operate data harmonisation as quickly and thoroughly as possible and without having to allocate significant amounts of resource to administration which could otherwise be used for the project itself. CCGs will, of course, ultimately be judged on their diagnosis rates in 2015 by NHSE, Department of Health and the public and this protocol is designed to support them in maximising such diagnosis rates. Data Harmonisation Protocol NHSE (South) 3
Appendix 1: FAQs What benefit is this to patients? National and local studies have shown that patients and carers want to know that they have dementia. A diagnosis can open doors to: access to timely medication; other forms of support including social, therapeutic and financial; the opportunity to discuss wishes and plan ahead; access specialist palliative care in a timely manner. A diagnosis also helps services to adapt care and communication to meet the needs of the individual and to provide relevant information for the patient and carer. How do I find out what my CCG or General Practice dementia diagnosis rate is? You can access the Dementia Prevalence Calculator (DPC) at www.primarycare.nhs.uk to see the dementia diagnosis rate for your GP practice. You will need to register to access the DPC if you haven t used it before. Instructions on registering and using the DPC can be found at: http://dementiapartnerships.com/diagnosis/dementia-prevalence-calculator/. In addition, QOF dementia register data is now being extracted on a monthly basis from General Practice (except in those practices who have opted out) to identify the number of patients on the QOF register. This data is being used by HSCIC to calculate dementia diagnosis rate for each Practice and CCG and is being made available to NHSE and CCGs to support monitoring of progress. Will there be funding available to support this work? A central pot of funding to support this work was announced on 3 rd October 2014. Money will be distributed to GP practices via CCGs from Area Teams. Further information will be available in due course. In addition, QOF DEM indicator 001 requires that, The contractor establishes and maintains a register of patients diagnosed with dementia. Increasing the number of patients on the practice QOF dementia register will increase pay per QOF point (see example, appendix 4). Re-running the toolkit searches at regular time intervals will also help the practice to demonstrate that they are maintaining their dementia register which is also a QOF requirement. How long will it take the practice to run and action the dementia data quality searches? And what work is needed? The searches themselves should take less than a minute to run and this will generate a Work to Do patient list for the Practice. Similar work carried out in other areas has shown that on average, it took 4-5 hours of GP time (1 session) to work through the list of patients generated. For the patients on the list, there are 3 possible courses of action: The GP reviews the patient and the code picked up within the search and decides that this patient does not need further investigation. e.g. patient who had a normal GP-COG assessment within the last 12 months. The GP can add a code to remove Data Harmonisation Protocol NHSE (South) 4
the patient from the work to do list (e.g. Read Code 6A5, CTv3 code Xalpj) which is incoroporated in the patient search as an exclusion. The GP reviews the patient record and identifies that the patient has been diagnosed but that no diagnosis code has been added e.g. correspondence from memory services indicates a diagnosis but this has not been coded appropriately. The GP adds the relevant diagnostic code to the patient s record (see list of codes, appendix 2) and the patient will then also automatically be removed from the search results. An on-screen review of the patient record indicates that the patient may have dementia but has not been formally diagnosed. A rapid review appointment with the most appropriate GP is arranged as soon as possible for diagnosis or onward referral to the Memory Clinic if appropriate. Findings from the Yorks & Humber pilots indicate that the number of patients who need a clinical review is relatively small. If a diagnosis code is being added to the patient record retrospectively, how do I address the QOF requirement that bloods are done within the 6-months previously? The QOF blood test requirement is designed to exclude other reversible causes of cognitive impairment at the time of diagnosis. If a diagnosis has already been made in the past then there is no justification for repeating the blood tests at the time of Read Code entry following patient identification through this protocol. Therefore the patient may be excepted from QOF blood test requirements as unsuitable. NHS England is also considering retiring the QOF dementia blood testing requirement in order to avoid this issue. Further information will be cascaded to CCGs and GPs by Area Teams if and when this is confirmed. Data Harmonisation Protocol NHSE (South) 5
Appendix 2: Recommended Read Codes for dementia The following Read Codes are recommended for use by GPs when undertaking this protocol. Each, when added to a patient clinical record, will ensure that the patient then appears on the QOF dementia register. Diagnostic description Read Code (e.g. EMIS systems) CTv3 code (e.g. SystmOne) Alzheimer s Disease Eu00z F110. Alzheimer s Disease with early onset F1100 X002x Alzheimer s Disease with late onset F1101 X0030 Vascular dementia Eu01z XE1XS Dementia in Parkinson s disease Eu023 Eu023 Fronto-temporal dementia Eu02y X0034 Lewy-body dementia Eu025 XaKyY Mixed dementia Eu002 Eu002 Unspecified dementia Eu02z XE1Z6 If a patient is diagnosed with Mild Cognitive Impairment, the code to use is: Read Code Eu057 or CTv3 code X00RS as appropriate for your GP practice system. Mild Cognitive Impairment is not a QOF dementia Read Code but using these codes will facilitate future running of this protocol if required. Data Harmonisation Protocol NHSE (South) 6
Appendix 3: dementia-related (but non-qof) Read Codes for Step 2 of the protocol Description Read Code CTv3 code H/O Dementia 1461. 1461. Dementia Monitoring 66h.. XaMJC Dementia Annual Review 6AB.. XaMGF Cognitive Decline 28E.. No equivalent Impaired Cognition 28E3. Ua189 Severe Cognitive Impairment 28E2. Xaagk Moderate Cognitive Impairment 28E1. Xaagj Confusion R009. R009. Confused 2841. 2841. Intermittent confusion - Xa1sZ Poor short term memory - X75xH Poor long term memory - X75xC Memory Impairment - X75xU Short term memory problems 1B1A1 No equivalent Forgetful 28G.. X75xV Memory lapses - Ua197 Age-associated memory impairment - X00RT Onset of confusion - Ua1W9 Referral to Memory Clinic 8HTY. XaJua Referral to psychiatrist for elderly mentally ill 8H4D. 8H4D. Additional EMIS Local codes EMIS dementia codes EMISNQDD2, EMISNQDV1, EMISNQDD1, EMISNQDD3 Dementia Review EMISNQDE1 Other EMISNQIM12 Any of the following drugs: Donezepil (Aricept, Aricept Evess ); Galantamine (Reminyl, Reminyl XL); Rivastigmine (Exelon ); Memantine hydrochloride (Ebixa ). Data Harmonisation Protocol NHSE (South) 7
Appendix 4: example of impact on GP earnings from increased QOF prevalence This example was provided by: Insight Solutions, www.insightsol.co.uk Data Harmonisation Protocol NHSE (South) 8