Empowering patients through questionnaires and feedback This Future Hospital Programme case study comes from Dr Stuart Kyle and Dr Bronwen-Mackenzie Green at Northern Devon Healthcare NHS Trust. It champions a core principle of the Future Hospital Commission report: patient experience is valued as much as clinical effectiveness. Authors: Dr Stuart Kyle, consultant rheumatologist, Northern Devon Healthcare NHS Trust, and Dr Bronwen Mackenzie-Green, consultant rheumatologist, Northern Devon Healthcare NHS Trust Key words: patient records, patient experience, survey, patient feedback, delivery of care
Key recommendations Issue questionnaires to people to gather data on real-time performance of services and data on demographics and patient s condition. Collecting data can change clinical practice and the way we think about long-term conditions. For example, we are now able to remotely review patients in remission. Feed patient reported experience measures (PREM) data back to managers on a regular basis (eg quarterly) to improve service planning. Encourage patients to be an active participant in their care, as well as support their knowledge of their condition/treatment options (particularly self-management). Emailing patients directly (with their permission) can save time and will encourage patients to be more active in their care. Generating data requires time, whereas web-based systems self-populate when patients enter their own data, reducing clerical burden. Local context Northern Devon District Hospital provides acute services for a population of around 175,000. From January 2015 January 2016 the rheumatology team saw: 923 new patients 2,959 follow-up appointments 322 elective day case treatments. The challenge Clinical commissioning groups (CCGs) require evidence that the work being done is cost effective and worthwhile to patients. In addition it is important that patients with chronic diseases feel empowered to self-manage and are aware of the outcomes that help guide treatment plans. The long-term goal is to give a population of patients the ability to understand and self-monitor their condition. This has to be the solution to our ever increasing population of long-term condition patients. We will also be able to discuss with commissioners which patients may be suitable for remote management. This project fundamentally changes the way we work in rheumatology. Dr Stuart Kyle, Northern Devon Healthcare NHS Trust Our solution We have developed a web-based questionnaire for patients to complete on tablet devices before and after outpatient rheumatology appointments. This allows us to collect patient baseline demographics; patient (and clinician) reported outcome measures (PROMs); and patient-related experience measures. 2
Our aim is to: improve data capture of those patients with common rheumatological conditions enhance patient participation in disease understanding gain real-time feedback of performance. high quality care needs to be evidenced by outcome measures demonstrating tangible health improvements or health maintenance. Methods We were able to use tablet devices that the hospital had purchased through our IT department. Funding for this was given as a trial; tablets were given through a nurse mobilisation grant awarded to the Trust and we installed Wi-Fi in the clinic as part of future EHR upgrade. The questionnaires were developed in collaboration with an NHS-based innovations company (3S Reporting), who have already provided other online surveys for the NHS; all resulting data is held on a secure server. We agreed a basic minimal data set and modelled the satisfaction data on the Commissioning for Quality Improvement in Rheumatoid Arthritis (CQRA) metrics. The tablet devices were introduced into the outpatient department in February 2015 and with the help of clinic staff we have been collecting data for nearly 12 months. This is an on-going project and the data collected so far is enabling us to build a picture of clinical outcomes. This picture encompasses: disability work productivity baseline data on driving status, smoking status and postcodes. The anonymised experience measures, including the facility for patients to write comments, can be reviewed by department or an individual clinical staff member. This data can then be used for departmental planning as a whole. Additionally it gives us real-time patient feedback, which can then be fed into supporting information for appraisals. An example of where this is already proving useful is the learning that patient education and the availability of education classes could be improved. Staffing The rheumatology team consists of: two consultants four specialist nurses one registrar. They were all shown the system and are happy to use. Outpatient receptionist and healthcare assistant in clinic also shown and happy to use (with minimal training required). They only use tablets to help collect PREM data. Outcomes Collected outcome data on specific patient groups (rheumatoid arthritis, ankylosing spondylitis and psoriatic arthritis) to assess the effect of their condition on work, activities of daily living and to monitor disease activity. Further conditions can/ will be added to the system over time. Collected satisfaction data to help plan our service, reassure commissioners and provide relevant supporting information regarding patient care and feed back to discuss at staff appraisals. Improved efficiency in outpatient appointments by having outcomes scores completed and calculated before and during appointments and to reduce the paper burden. 3
Improved patient education and understanding of rheumatological conditions by having an awareness of outcome data that may guide management decisions. This project aims to help the way we capture data. It has been helpful to individual patients who have felt more engaged with their condition and feeling able to feedback ways to improve our service. A patient with newly diagnosed rheumatoid arthritis attended clinic and we asked him to fill out a questionnaire encompassing: smoking; driving; the health assessment questionnaire (HAQ); and disease activity score (DAS). During the patient s first appointment he was able to see the outcome scores that help guide treatment. His scores showed he had high disease activity and that his daily activities were significantly affected by the condition. When we advised commencing methotrexate the patient reported that he felt aware of the need for treatment in order to get the condition into remission. At the end of the consultation he completed a satisfaction questionnaire. When we saw him again in 6- weeks he informed us that the satisfaction questionnaire had made him aware of: the services that should be available to him including a named person to call in case of concerns with regard to his treatment the chance to attend self-management sessions. At the second appointment we were able to show that his disease score had reduced and his functional ability had improved. Although these improvements are often self-evident, for us and patients, having a meaningful and easy way to document these improvements is important to aid patient understanding as well as demonstrate clinical efficacy. The long-term goal is to give a population of patients the ability to understand and self-monitor their condition. Dr Stuart Kyle, Northern Devon Healthcare NHS Trust Key learning This project fundamentally changes the way we work in rheumatology. Prior to this project there was no easy way of accessing outcome data for a given time period. With the introduction of this data collection, we are able to look at improvements in outcomes scores over time in cohorts of patients. The data is all web based on a secure N3 network automatically updating so there is no need for a database manager or data input facilitator. Data can be exported as a text file. This will provide meaningful data to present to commissioners and the satisfaction data will also be useful for clinicians to use in their appraisals. Age, IT literacy and manual dexterity have acted as a potential barrier. Usually, if the patient is virtually walked through it then they are OK and enjoy it. It is not the answer for all patients. We will be gathering data on email uptake and compliance with completion of Patient Reported Outcome Measures (PROMs). Patient feedback Amazing service, always helpful and understanding. Clinical treatment is excellent. I was seen promptly, nice enough waiting room, however parking was impossible. I parked in Pilton and noticed the car I was behind was still waiting to get into the car park. Please improve. Really pleased with the service, couldn t ask for better care.. 4
What s next? At the end of 2015 we began emailing links to patients, after verbal consent was given. Patients are now completing disease specific patient reported outcomes at home with results populating on our web-based dashboard. Data is still collected on all other patients who decline to email. This is done outside of the clinic therefore empowering patients with long term conditions to engage with their healthcare outside of the hospital. We hope this will also save time, both for the patient and the clinician and we are in the process of reviewing uptake and compliance accordingly. From our investigations we found nothing in the literature about patient participation with email health in this way, we are excited to review the uptake and completion of PROMs. Dr Mackenzie-Green the former ST4 at North Devon District Hospital who has been integral in facilitating the initiation of this project is now training at Royal Devon and Exeter a nearby Trust. She is introducing the system to this Trust and we look forward to comparing results and discussing any technical issues that arise. We are currently recruiting appropriate patients to be educated to self-report (first sessions to be held March 2016) DAS with the help of a well-validated and big awareness campaign launched by the National Rheumatoid and Arthritis Society (NRAS). This case study is not an endorsement of any individual or organisation. The material within is promotional only and we do not necessarily reflect the views of the author and the organisation they represent. Future Hospital Programme Royal College of Physicians 11 St Andrews Place Regent s Park London NW1 4LE Tel: +44 (0)20 3075 1585 Email: futurehospital@rcplondon.ac.uk www.rcplondon.ac.uk 5