A qualitative exploration of patients’ experiences, needs and expectations regarding online access to their primary care record

ObjectivesPrimary care records have traditionally served the needs and demands of clinicians rather than those of the patient. In England, general practices must promote and offer registered patients online access to their primary care record, and research has shown benefits to both patients and clinicians of doing so. Despite this, we know little about patients’ needs and expectations regarding online access to their record. This study explored what patients and carers want from online access to their electronic primary care health record, their experiences of using it, how they would like to interact with their record and what support they may need.DesignFocus groups and semistructured interviews using purposive sampling to achieve a good sociodemographic spread. Interviews were digitally audiorecorded, transcribed and coded using an established thematic approach.SettingFocus groups and interviews were conducted in community settings in the UK.ParticipantsFifty-four individuals who were either eligible for the National Health Service Health Check, living with more than one long-term condition or caring for someone else.ResultsParticipants views regarding online access were categorised into four main themes: awareness, capabilities, consequences and inevitability. Participants felt online access should be better promoted, and suggested a number of additional functions, such as better integration with other parts of the healthcare system. It was felt that online access could improve quality of care (eg, through increased transparency) but also have potential negative consequences (eg, by replacing face to face contact). A move towards more online records access was considered inevitable, but participants noted a need for additional support and training in using the online record, especially to ensure that health inequalities are not exacerbated.ConclusionsDiscussions with patients and carers about their views of accessing online records have provided useful insights into future directions and potential improvements for this service.

Specialist respiratory outreach: a case-finding initiative for identifying undiagnosed COPD in primary care

COPD remains largely undiagnosed or is diagnosed late in the course of disease. We report findings of a specialist outreach programme to identify undiagnosed COPD in primary care. An electronic case-finding algorithm identified 1602 at-risk patients from 12 practices who were invited to attend the clinic. Three hundred and eighty-three (23.9%) responded and 288 were enrolled into the study. Forty-eight (16.6%) had undiagnosed mild and 28 (9.7%) had moderate airway obstruction, meeting spirometric diagnostic criteria for COPD. However, at 12 months only 8 suspected COPD patients (10.6%) had received a diagnostic label in their primary care record. This constituted 0.38% of the total patient population, as compared with 0.31% of control practices, p = 0.306. However, if all patients with airway obstruction received a coding of COPD, then the diagnosis rate in the intervention group would have risen by 0.84%. Despite the low take-up and diagnostic yield, this programme suggests that integrated case-finding strategies could improve COPD recognition.

Timing of GP end-of-life recognition in people aged ≥75 years: retrospective cohort study using data from primary healthcare records in England

BackgroundHigh-quality, personalised palliative care should be available to all, but timely recognition of end of life may be a barrier to end-of-life care for older people.AimTo investigate the timing of end-of-life recognition, palliative registration, and the recording of end-of-life preferences in primary care for people aged ≥75 years.Design and settingRetrospective cohort study using national primary care record data, covering 34% of GP practices in England.MethodResearchOne data from electronic healthcare records (EHRs) of people aged ≥75 years who died in England between 1 January 2015 and 1 January 2016 were examined. Clinical codes relating to end-of-life recognition, palliative registration, and end-of-life preferences were extracted, and the number of months that elapsed between the code being entered and death taking place were calculated. The timing for each outcome and proportion of relevant EHRs were reported.ResultsDeath was recorded for a total of 13 149 people in ResearchOne data during the 1-year study window. Of those, 6303 (47.9%) records contained codes suggesting end of life had been recognised at a point in time prior to the month of death. Recognition occurred ≥12 months before death in 2248 (17.1%) records. In total, 1659 (12.6%) people were on the palliative care register and 457 (3.5%) were on the register for ≥12 months before death; 2987 (22.7%) records had a code for the patient’s preferred place of care, and 1713 (13.0%) had a code for the preferred place of death. Where preferences for place of death were recorded, a care, nursing, or residential home (n = 813, 47.5%) and the individual’s home (n = 752, 43.9%) were the most common.ConclusionEnd-of-life recognition in primary care appears to occur near to death and for only a minority of people aged ≥75 years. The findings suggest that older people’s deaths may not be anticipated by health professionals, compromising equitable access to palliative care.

Emergency care access to primary care records: an observational study

ObjectiveTo measure lookup rates of externally held primary care records accessed in emergency care and identify patient characteristics, conditions and potential consequences associated with access.MeasuresRates of primary care record access and re-presentation to the emergency department (ED) within 30 days and hospital admission.DesignA retrospective observational study of 77 181 ED presentations over 4 years and 9 months, analysing 8184 index presentations in which patients’ primary care records were accessed from the ED. Data were compared with 17 449 randomly selected index control presentations. Analysis included propensity score matching for age and triage categories.Results6.3% of overall ED presentations triggered a lookup (rising to 8.3% in year 5); 83.1% of patients were only looked up once and 16.9% of patients looked up on multiple occasions. Lookup patients were on average 25 years older (z=−9.180, p<0.001, r=0.43). Patients with more urgent triage classifications had their records accessed more frequently (z=−36.47, p<0.001, r=0.23). Record access was associated with a significant but negligible increase in hospital admission (χ2 (1, n=13 120)=98.385, p<0.001, phi=0.087) and readmission within 30 days (χ2 (1, n=13 120)=86.288, p<0.001, phi=0.081).DiscussionEmergency care clinicians access primary care records more frequently for older patients or those in higher triage categories. Increased levels of inpatient admission and re-presentation within 30 days are likely linked to age and triage categories.ConclusionFurther studies should focus on the impact of record access on clinical and process outcomes and which record elements have the most utility to shape clinical decisions.

What do patients want? A qualitative exploration of patients’ needs and expectations regarding online access to their primary care record

BackgroundPrimary care records have traditionally served the needs and demands of clinicians rather than those of the patient. GP contracts in England state practices must promote and offer registered patients online access to their primary care record and research has shown benefits to both patients and clinicians of doing so. Despite this, we know little about patients’ needs and expectations regarding online access.AimTo explore patients’ views about accessing online primary care records and to find out how patients would like to interact with their records and what support they may need.MethodInterviews and focus groups with a sample of 50 patients from a variety of socio-demographic backgrounds who were either; eligible for the NHS Health Check; had multimorbidities or were carers. Thematic analysis of data identified major themes impacting upon patients’ wishes and needs as well as highlighting population-specific issues.ResultsParticipants highlighted a wide range of views about the benefits and drawbacks of accessing their records online. The majority of participants indicated that they would be more likely to access their online primary care record if improvements were made to the design, reliability and functionality of existing online record services. Carers found accessing online records particularly useful.ConclusionConsultation with patients and carers about their experiences of accessing online records; support needs and preferred functions can provide useful insights to inform the future design of online record services.

Undiagnosed dementia in primary care: a record linkage study

Background The number of people living with dementia is greater than the number with a diagnosis of dementia recorded in primary care. This suggests that a significant number are living with dementia that is undiagnosed. Little is known about this group and there is little quantitative evidence regarding the consequences of diagnosis for people with dementia. Objectives The aims of this study were to (1) describe the population meeting the criteria for dementia but without diagnosis, (2) identify predictors of being diagnosed and (3) estimate the effect of diagnosis on mortality, move to residential care, social participation and well-being. Design A record linkage study of a subsample of participants (n = 598) from the Cognitive Function and Ageing Study II (CFAS II) (n = 7796), an existing cohort study of the population of England aged ≥ 65 years, with standardised validated assessment of dementia and consent to access medical records. Data sources Data on dementia diagnoses from each participant’s primary care record and covariate and outcome data from CFAS II. Setting A population-representative cohort of people aged ≥ 65 years from three regions of England between 2008 and 2011. Participants A total of 598 CFAS II participants, which included all those with dementia who consented to medical record linkage (n = 449) and a stratified sample without dementia (n = 149). Main outcome measures The main outcome was presence of a diagnosis of dementia in each participant’s primary care record at the time of their CFAS II assessment(s). Other outcomes were date of death, cognitive performance scores, move to residential care, hospital stays and social participation. Results Among people with dementia, the proportion with a diagnosis in primary care was 34% in 2008–11 and 44% in 2011–13. In both periods, a further 21% had a record of a concern or a referral but no diagnosis. The likelihood of having a recorded diagnosis increased with severity of impairment in memory and orientation, but not with other cognitive impairment. In multivariable analysis, those aged ≥ 90 years and those aged < 70 years were less likely to be diagnosed than other age groups; those living with a spouse (odds ratio 2.38, 95% confidence interval 1.04 to 5.41) were more likely to be diagnosed than people living alone. The median time to diagnosis from first meeting the criteria for dementia was 3 years. Diagnosis did not affect survival or the probability of a move to residential care. Limitations People with moderate to severe dementia at baseline could not consent to record linkage. The small numbers in some groups limited power to detect effects. Conclusions The lack of relationship between severity of non-memory impairment and diagnosis may reflect low awareness of other symptoms of dementia. There remains little objective evidence for benefits of diagnosis for people with dementia. Future work Potential benefits of diagnosis can be realised only if effective interventions are accessible to patients and carers. Future work should focus on improving support for people living with cognitive impairment. Study registration National Institute for Health Research Clinical Research Network Central Portfolio Management System (CPMS 30655). Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 20. See the NIHR Journals Library website for further project information.

Palliative care for non-cancer conditions in primary care: a time trend analysis in the UK (2009–2014)

ObjectivesWhile guidelines recommend palliative care in non-cancer conditions, this has not been widely implemented. We examined whether the recording of a palliative care approach and the numbers of hospital deaths for deceased patients with heart failure, dementia, chronic obstructive pulmonary disease (COPD) and cancer have changed since the UK End-of-Life Care Strategy was introduced.MethodsWe conducted sequential cross-sectional studies of decedents within the UK’s Clinical Practice Research Datalink and Hospital Episode Statistics. All adults with a primary care record of COPD (n=5426), dementia (n=7339), heart failure (n=6409) or cancer (n=18 668) who died during three 1 year periods (April 2009 to March 2014) were included. Evidence of a palliative care approach was identified from primary care records, and death in hospital from secondary care data.ResultsFrom 2009 to 2014, proportions with a primary care record of palliative care increased for COPD from 13.6% to 21.2%; dementia from 20.9% to 40.7%; and heart failure from 12.6% to 21.2%; but remained substantially lower than for cancer (57.6% to 61.9%). Median days before death of recording improved for COPD (145 to 224) and dementia (44 to 209); but not for heart failure (168.5 to 153) and cancer (123 to 114). Trends in hospital deaths were not consistently downward, although the proportions of patients dying in hospital were lower in the last period compared with the first.ConclusionsRecording of a palliative care approach for non-cancer conditions has increased since the introduction of the UK End-of-Life Care Strategy, but remains inadequate.

Do virtual renal clinics improve access to kidney care? A preliminary impact evaluation of a virtual clinic in East London

Background Early identification of people with CKD in primary care, particularly those with risk factors such as diabetes and hypertension, enables proactive management and referral to specialist services for progressive disease. The 2019 NHS Long Term Plan endorses the development of digitally-enabled services to replace the ‘unsustainable’ growth of the traditional out-patient model of care.Shared views of the complete health data available in the primary care electronic health record (EHR) can bridge the divide between primary and secondary care, and offers a practical solution to widen timely access to specialist advice. Methods We describe an innovative community kidney service based in the renal department at Barts Health NHS Trust and four local clinical commissioning groups (CCGs) in east London. An impact evaluation of the changes in service delivery used quantitative data from the virtual CKD clinic and from the primary care electronic health records (EHR) of 166 participating practices. Survey and interview data from health professionals were used to explore changes to working practices. Results Prior to the start of the service the general nephrology referral rate was 0.8/1000 GP registered population, this rose to 2.5/1000 registered patients by the second year of the service. The majority (> 80%) did not require a traditional outpatient appointment, but could be managed with written advice for the referring clinician. The wait for specialist advice fell from 64 to 6 days. General practitioners (GPs) had positive views of the service, valuing the rapid response to clinical questions and improved access for patients unable to travel to clinic. They also reported improved confidence in managing CKD, and high levels of patient satisfaction. Nephrologists valued seeing the entire primary care record but reported concerns about the volume of referrals and changes to working practices. Conclusions ‘Virtual’ specialist services using shared access to the complete primary care EHR are feasible and can expand capacity to deliver timely advice. To use both specialist and generalist expertise efficiently these services require support from community interventions which engage primary care clinicians in a data driven programme of service improvement.

Natural language processing for disease phenotyping in UK primary care records for research: a pilot study in myocardial infarction and death

Background Free text in electronic health records (EHR) may contain additional phenotypic information beyond structured (coded) information. For major health events – heart attack and death – there is a lack of studies evaluating the extent to which free text in the primary care record might add information. Our objectives were to describe the contribution of free text in primary care to the recording of information about myocardial infarction (MI), including subtype, left ventricular function, laboratory results and symptoms; and recording of cause of death. We used the CALIBER EHR research platform which contains primary care data from the Clinical Practice Research Datalink (CPRD) linked to hospital admission data, the MINAP registry of acute coronary syndromes and the death registry. In CALIBER we randomly selected 2000 patients with MI and 1800 deaths. We implemented a rule-based natural language engine, the Freetext Matching Algorithm, on site at CPRD to analyse free text in the primary care record without raw data being released to researchers. We analysed text recorded within 90 days before or 90 days after the MI, and on or after the date of death. Results We extracted 10,927 diagnoses, 3658 test results, 3313 statements of negation, and 850 suspected diagnoses from the myocardial infarction patients. Inclusion of free text increased the recorded proportion of patients with chest pain in the week prior to MI from 19 to 27%, and differentiated between MI subtypes in a quarter more patients than structured data alone. Cause of death was incompletely recorded in primary care; in 36% the cause was in coded data and in 21% it was in free text. Only 47% of patients had exactly the same cause of death in primary care and the death registry, but this did not differ between coded and free text causes of death. Conclusions Among patients who suffer MI or die, unstructured free text in primary care records contains much information that is potentially useful for research such as symptoms, investigation results and specific diagnoses. Access to large scale unstructured data in electronic health records (millions of patients) might yield important insights.

Predictors of late presentation to renal dialysis: a cohort study of linked primary and secondary care records in East London

ObjectivesThe outcomes and experience of care for patients who start renal replacement therapy (RRT) in an unplanned manner are worse than for those who have planned care. The objective of this study was to examine the primary care predictors of unplanned starts to RRT.DesignRetrospective cohort study with linked primary care and hospital data.Setting128 general practices in East London with a combined population of 1 043 346 people.Participants999 consecutive patients starting dialysis at Barts Health National Health Service Trust between September 2014 and August 2017.Primary outcome measuresUnplanned versus a planned start to dialysis among the cohort of 389 patients with a linked primary care record. An unplanned start to dialysis is defined as receiving nephrology care in the low clearance clinic (or equivalent) for less than 90 days. A planned start is defined as access to pre-dialysis counselling and care for at least 90 days prior to commencing dialysis.ResultsThe adjusted logistic regression analysis showed that the most important modifiable risk factors for unplanned dialysis were the absence of a chronic kidney disease (CKD) code in the general practice (GP) record (OR 8.02, 95% CI 3.65 to 17.63) and the absence of prescribed lipid lowering medication (OR 2.37, 95% CI 1.05 to 5.34). Other contributing factors included male gender and a greater number of long-term conditions.ConclusionsImproving CKD coding in primary care and the additional review and clinical scrutiny associated with this may contribute to a further reduction in unplanned RRT rates.