Standardisation in Recording Patient Activity Reporting in Scotland

1. Standardisation in Recording Patient Activity Reporting in Scotland Carol Gardiner Consultant in Clinical Genetics Ferguson Smith Centre for Clinical Genetics

2. Standardisation in Recording Patient Activity Reporting: The Scottish Experience • Referrals New referral rate 80 per 100,000 population • New Referral A new referral is an individual referred to a clinical genetics service with a new diagnosis or health problem Shall collect self-referrals and referrals from other health professionals separately • Follow up All patients seen for the same issue regardless of the time interval • Referral Counting This is done differently in different centres • The options are Count each referral letter as one referral Count each individual name on the referral letter as one referral i.e. couple 2 referrals, couple with 2 affected children 4 referrals or something similar

3. Standardisation in Recording Patient Activity Reporting: The Scottish Experience • Referral Indication Neuromuscular Genetics • Myopathies, muscular dystrophies and myotonic dystrophy Are we agreeing as a group that this category in all 4 centres will ONLY be applied to patients seen by the Neuromuscular Genetics Team? Learning Disability • All cases referred to the Clinical Genetics Services with Learning Disability. This will apply to patients referred with epilepsy and learning difficulties and Paediatric Neurology cases referred with learning disability Cardiac Genetics • All patients referred to the service with possible inherited cardiac disorders including cardiomyopathies disorders and arrhythmia and all patients attending for diagnostic and predictive molecular testing for inherited single gene cardiac disorders associated with these conditions and Marfan syndrome and Loeys-Dietz Cancer Genetics • All patients referred to the service to have a risk assessment performed because they are either affected by cancer or have a family history of cancer and all patients attending for diagnostic and predictive molecular testing for inherited single gene cancer disorders In Glasgow this would include Haematological malignancies and DNA repair defects e.g. Fanconi and Ataxia Telengectasia General/Other • Everything else

4. Standardisation in Recording Patient Activity Reporting: The Scottish Experience • Referral Management Urgent • See within 5 working days PND where action is required in pregnancy Ward referral • Routine/Other See within 13 weeks of referral

5. Standardisation in Recording Patient Activity Reporting: The Scottish Experience Counting Clinical Activity Count appointments This would mean that whatever constituted an appointment i.e. 30 or 45 minutes would count as one, if a double appointment was arranged this would count as 2 and so on Couple with infertility 1 appt Family with children with Learning disability that need examined Booked as double appointment 2 appts Count the number of individuals at genetic risk in an the appointment Breast Cancer Patient and husband 1 appt Infertile couple 2 appts 2 siblings 2 appts Mother, father and 2 children 4 appts Count significant interactions i.e. examining someone in an appointment Mother, father and child with NF1 you have to examine/take blood 3 appts Mother with breast cancer and daughter you did not take blood from 1 appt Pre-clinic Contact Count separately labelled as pre-clinic contact Count as an appointment with other appointments for that individual or family • A Attended • DNA Do not attend appointment • CD Telephone to cancel appointment even after appointment date • Cancelled by Department Clinic has been cancelled by service for whatever reason

6. NHS England Service Designation: Clinical Genetics • Quality Monitoring reported Monthly Non attendance rates Percentage of ethnic data collected Percentage of patients meeting the 18 week target Percentage of patients excluded from the 18 week target due to the complex nature of the testing (Predictive Genetic testing).

7. NHS England Service Designation: Clinical Genetics • Definition of a Referral It is not reasonable to count individuals as separate referrals unless they are being seen and dealt with separately. If a couple are to be seen together then they should count as one referral; if two siblings are to be seen together they should count as one referral; if they are seen and followed up separately then they should be counted separately. Currency will be ‘attendance’ as with all other specialties (activity not counted as number of patients seen) – 1st and follow up as there is a need to use something that can be recorded on PAS; genetics can count number of patients to audit, but still can record activity as 1st and follow up appointments on PAS. • Self Referrals Are not permitted and should not be seen or contacted directly unless there has been an authorisation from the ‘responsible commissioner’ (this could be either the PCT or relevant Specialised Commissioning Group SCG). The responsible commissioner is a recognised term within DOH guidance and is supported by various policy documents that determine who the responsible commissioner is in different circumstances. Providers must establish who that is and have a contract that covers their service including whether approval prior to treatment is required; if they don’t have a contract that covers them then they must approach the commissioner to seek approval – commissioners will not pay otherwise. Self referral does not exist in the NHS. If a patient arrives with a sibling for an outpatient appointment the sibling would not be counted as activity as no extra work has had to be undertaken for them to be seen with the patient. If further work needs to be undertaken for the sibling then a referral will need to be sought before any the work can commence. Any newly identified ‘at risk’ family members will have to be referred before being seen as a new patient. • Outpatient Follow-Ups All patients seen for the same issue should be counted as follow-ups regardless of the time interval. This is known as ‘open follow-up’ and is standard practice in other specialties and genetics is no different. There is a case for known patients being seen regarding a different issue to be considered as a new referral. • Family Appointments It is recognised that genetic services provide family appointments and should be counted once, however the data collected should only be for the patients included in the referral and the full minimum data set collected for the relevant family members. Family members who attend family appointments without being referred cannot be counted as activity. • Joint Clinic Appointments with other specialties Joint clinic appointments with other specialties, for example, cardiology, should be recorded under the specialty. Genetic staff attendance should be funded through the specialty through a cross charging mechanism. However if the patient is counselled separately then the activity would be charged as a follow up appointment. This is to ensure that there is no double counting by genetics and the specialty.

8. NHS Scotland Performance Targets • Health Improvement • Efficiency Targets NHS Boards to deliver agreed improved efficiencies for 1st outpatient attendance DNA, non-routine inpatient average length of stay, review to new outpatient attendance ratio, same-day surgery and pre-operative stay. DNA rate to 9.2 per cent in the year ending March 2010 The target is to achieve a reduction of the review to new outpatient attendance ratio to 2.21 by the year ending March 2011. • Access Deliver 18 weeks referral to treatment from 31 December 2011. No patient will wait longer than 12 weeks from referral (all sources) to a first outpatient appointment from 31 March 2010. No patient will wait longer than 9 weeks from being placed on a waiting list to admission for an inpatient or day case treatment from 31 March 2011. • Treatment Appropriate to Individuals - ensure patients receive high quality services that meet their needs.

9. Capacity Planning to Meet Waiting Time Initiatives • Definition of FUN ratio The first time a patient attends a a clinic, the appointment is regarded as a new patient (NP) appointment. Subsequent visits for the same or other reasons are regarded as follow-up (FU) appointments. FUN ratio = FU NP Where FU = total number of follow-up patients (FU) seen and NP = total number of new patients (NP) seen. • For example, 01/09/2009-30/08/2010 I saw 238 NPs and 166 FU patients are seen, the FUN ratio is 238/166 = 1.43. • Another way of expressing activity is New Referral: Activity Ratio and New Referral: Follow up Ratio • In terms of service activity, his may be a more accurate way of expression Clinical Genetics Activity

10. Conclusions • Standardisation of data recording allows accurate comparison of data between centres • It allows the collections of data on equity of referrals From different regions From different ethnic groups • It allows targeting of services in areas of inequity

11. EU Council Recommendation on Rare Diseases 2009 HEREBY RECOMMENDS THAT MEMBER STATES: PLANS AND STRATEGIES IN THE FIELD OF RARE DISEASES Establish and implement plans or strategies for rare diseases at the appropriate level or explore appropriate measures for rare diseases in other public health strategies, in order to aim to ensure that patients with rare diseases have access to high-quality care, including diagnostics, treatments, habilitation for those living with the disease and, if possible, effective orphan drugs ADEQUATE DEFINITION, CODIFICATION AND INVENTORYING OF RARE DISEASES Use for the purposes of Community-level policy work a common definition of rare disease as a disease affecting no more than 5 per 10 000 persons. Aim to ensure that rare diseases are adequately coded and traceable in all health information systems, encouraging an adequate recognition of the disease in the national healthcare and reimbursement systems based on the ICD while respecting national procedures. RESEARCH ON RARE DISEASES Identify ongoing research and research resources in the national and Community frameworks in order to establish the state of the art, assess the research landscape in the area of rare diseases, and improve the coordination of Community, national and regional programmes for rare diseases research. Identify needs and priorities for basic, clinical, translational and social research in the field of rare diseases and modes of fostering them, and promote interdisciplinary co-operative approaches to be complementarily addressed through national and Community programmes. CENTRES OF EXPERTISE AND EUROPEAN REFERENCE NETWORKS FOR RARE DISEASES Identify appropriate centres of expertise throughout their national territory by the end of 2013, and consider supporting their creation. Foster the participation of centres of expertise in European reference networks respecting the national competences and rules with regard to their authorisation or recognition. EN 3.7.2009 Official Journal of the European Union C 151/9 Organise healthcare pathways for patients suffering from rare diseases through the establishment of cooperation with relevant experts and exchange of professionals and expertise within the country or from abroad when necessary. Support the use of information and communication technologies such as telemedicine where it is necessary to ensure distant access to the specific healthcare needed. EMPOWERMENT OF PATIENT ORGANISATIONS Consult patients and patients′ representatives on the policies in the field of rare diseases and facilitate patient access to updated information on rare diseases. Promote the activities performed by patient organisations, such as awareness-raising, capacity-building and training, exchange of information and best practices, networking and outreach to very isolated patients. SUSTAINABILITY Together with the Commission, aim to ensure, through appropriate funding and cooperation mechanisms, the long-term sustainability of infrastructures developed in the field of information, research and healthcare for rare diseases.

12. Suggestions in Scotland • List of all Specialised Clinics in which Clinical Genetics are involved to RDUK • List of all Clinical Networks in Scotland in which Clinical Genetics are involved to RDUK