Practical use and clinical improvements by Quality Registries within Ophthalmology Susanne Albrecht, Project Manager, Register Center South, Eye Net Sweden, Blekinge Hospital

Agenda Quality Registries within Ophthalmology Knowledge management Macula Register Quality improvement - HDMI project Practical use in 5 teams Lessons learned

Quality Registers - Ophthalmogy National Cataract Register 1992 Cornea Register 1996 SWEDROP 2005 PECARE 2006 Makula Register 2008 SKRS Rehabilitation for visually impaired 2015

Knowledge management in Swedish Healthcare Research National guidelines indicators Systematic reviews Clinical praxis Quality measurements Svenska Makularegistret 2018-09-18 RC SYD EYENET SWEDEN

The National Quality Registries- of great value, there are of cause some question which still remains regarding if different regsitries had different goals, what are the risks in , should the registries be leading in IT development. Onlinedata är en viktig förutsättning för förbättringsarbete och datakvalitet enligt vissa register 9 Källa: Vårdanalys intervjustudie med registerhållare våren år 2014 ”[…]återrapporteringen har varit nyckel till den höga täckningsgraden för registret. De som registrerar ser det inte som att trycka in saker utan det är ett verktyg som hjälper dem se vad de ska göra med patienten.” ”Enheter kan när som helst på dygnet plocka fram sin egna rådata, och har kunnat göra så sedan 1999, och ändå får jag samtal konstant där de ber mig ta fram.” - Intervju med registerhållare, april 2014 - Intervju med registerhållare, maj 2014 Focus on the Patient- Best care for the Patient Objective should be clear and the relevance to all stakeholders (patient, profession, regulatory, industry) confirmed Planning is important: include resource and regulatory, statistical, medical expertise Organisation around the registries- Governance, Owner, Processes Coverage! Integration with IT systems are important

Makula Register 2014 Symptom duration Check-ups Diagnosis Check-ups Treatments Check-ups 2018-09-18 RC SYD EYENET SWEDEN

Units taking part 35 units 2013 38 units 2014 39 units 2015 2 private units 2018-09-18 RC SYD EYENET SWEDEN

Makula Register update 2007-2015-05-29 Registry, total database 2018-09-18 19 960 patients gender 36 % male 64 % female 23 256 eyes 331 421 visits, including treatments 162 844 treatments RC SYD EYENET SWEDEN

Number of eyes and patients 2018-09-18 RC SYD EYENET SWEDEN Antalet nya patienter och nya fall ökar.

Number of visits and treatments 2018-09-18 RC SYD EYENET SWEDEN

Therapy, anti-VEGF 2011-oct 2014 CATT-study was published, May 2011, several regions decided to switch from Lucentis to Avastin. In November 2012 aflibercept (Eylea) was approved for treatment of wet AMD. During 2013-2014 you can see a steady increase for Eylea

Number of patients and eyes at each unit in Sweden 2018-09-18 RC SYD EYENET SWEDEN Antalet ögon – röd stapel, antalet patienter – blå stapel. Några exempel på stora enheter i SMR är St Erik, Uddevalla, Södersjukhuset. Halmstad och Värnamo har börjat registrera under 2014, därför är de så små. Sahlgrenska Mölndal registrerade inte under 2013, men vi har ett inplanerat besök den 26/11.

RC SOUTH/EYENET SWEDEN HDMI-PROJECT RC SOUTH/EYENET SWEDEN Five teams Eye Departments in Sweden S:t Eriks Eye Hospital, Stockholm Norrlands University Hospital, Umeå Mälarsjukhuset, Eskilstuna Nyköping Vrinnevi Hospital, Norrköping Lycksele Hospital, Lycksele Copyright ID 34357450 - Belahoche - Dreamstime.com

MAUREEN BISOGNANO CEO, INSTITUTE FOR HEALTHCARE IMPROVEMENT Flip healthcare Partnership with patients Never forget to ask a patient ”What matters for you today?” 2018-09-18 14

Patient- and relatives involved in improvements in healthcare

Team 1 Eye Department Hospital in Eskilstuna/ Nyköping Problems Difference in duration of symptoms between the two hospitals in the county. What is it that makes patients come in with long onset period to Eskilstuna than elsewhere in the country as well as in Nyköping? Goal Reach the same symptoms duration as the country average (35%) for patients treated within 2 months. Changes/Improvements/PDSA (Plan Do Study Act) Information for those who answer telephone. The time has been shortened for patients calling for a medical examination. Conclusion Today, the telephone counseling works fine in both hospitals. The patients get time for medical check-up within a week.

Team 1: Eye Department Hospital in Nyköping/Eskilstuna Nyköping Symptom duration 2014 Eskilstuna Symptom duration 2014

Team 2: Eye department, Lycksele hospital Backgrund/problems Why do we have such a high bar for patients coming with 4-6 months symptom duration? Goal Find out how long it takes for patients to commence treatment Changes tested/PDSA: Analyze patient flows. Referrals of suspected macula problem, doctor within 1 month. When the patient does FAG / ICG, he/she meets a doctor the same day for evaluation and information. Gets scheduled for injection No. 1. Working on to make FAG / ICG on the same day as first visit (Patients generally travels far to the hospital)

Team 2: Eye department, Lycksele hospital Result Nov 2013 10 patients First visit – IVT No 1 26,7 days April 2014 8 patienter First visit – IVT No 1 21,7 days Lycksele symptom duration 2014

Team 3: Treatment Eye Department, Norrlands University Hospital, Umeå Backgrund/problems The number of treatments with anti-VEGF increases constantly. This is partly due to increased awareness of the population that treatment are now available for wet AMD, but also because the known indications has increased. Goal 1. Gradually increase the proportion of injections performed by nurses. This is to release the medical resource (doctors), likely at a cost profit. Target: 90% Week 12 2. A smoother production. Numbers directly called should not vary by more than +/- 3 from week to week. 3. Gradually decrease the number of medical disorders. Target: 15% Week 12 4. Patients should get scheduled for the next injection during the current visit. Target: 80% Week 12 5. The nurse records the injection visits. Goals: 100% week 12 6. Unchanged or preferably fewer complications. Target: No endophthalmitis due to anti-VEGF injection of medical retina.

Team 3: Treatments Eye Department, Norrlands University Hospital, Umeå Results Goal 1 The target was 90% injections performed by nurses at the measuring end . This was achieved earlier. Goal 2 To keep the number of directly called at a steady level. Has not yet been achieved. Goal 3 To gradually reduce the number of disturbance. Has only partially succeeded. There is variation in disturbances due to staffing situation. Goal 4 To allow patients to be scheduled for the next injection directly. Most weeks during the measurement period, this proportion was 100%. Goal 5 The nurses record all their injection visits, (100 %). Goal 6 No registered endophthalmitis during the measuring period. Umeå was the first Swedish clinic to start with injections performed by nurses

Team 4: Eye Department, Vrinnevi Hospital, Norrköping Backgrund/problems: Our clinic treats more patients with both low visual acuity and near visual acuity. A new care program has been developed concerning when the patients eye status is stable and no injections are needed. Problems with overbooking and long waits at the reception, which gives a stressed staff. Goals: 1. Of returning AMD patients in march 2014, 80% should follow the care program. 2. Number of visits at the clinic should be reduced by 15% between September 2013 to March 2014. 3. The stress level of the staff should not increase (balanced measure). Changes tested/PDSA: New care program was introduced in October 2013. Results: 1. Journal review was performed in March 2014. It shows that 84% of patients followed the care program. 2. Number of visits to the clinic has been reduced by 14.4% for the specified period. 3. Staff stress level was measured to 32 on the VAS scale (lower). 2018-09-18 RC SYD EYENET SWEDEN

Team 5 Eye Department , Sankt Eriks Eye Hospital, Stockholm Goals: 1. At least 90% of our patients that are assessed as priority 1 will have a time with us within 14 days of the referral date. 2. At least 90% of our patients who will receive their first injection should be given a time for this within 14 d from decision. 3. At least 90% of our patients receiving treatment must be correctly registered in the macula register. 4. The treatment frequency must at least follow the national results for the first year. 5. Analyze the results and fix problem areas from our patient survey.

Team 5: Eye Department Sankt Eriks Hospital, Stockholm Average injections year 1 Jan-May 2014 Results: Percentage of patients reciving a time for a visit within 14 days: 100%. Percentage of patients that recieved their first injection within 14 days: 89% in March, 96% in September. Average waiting time: 9 days. Percentage correctly registered in macula register 2013: 95%. Average of treatments per patient 2013 (first year): 4.98 (country: 5.13). Patient survey after treatment: Did you recieve information where to turn? 2012 = 61% 2014=70% Did anyone tell you what symptoms to look for? 2012=44% 2014=36% Country (blue), Sankt Eriks (orange)

Percentage visual acuity < 0,1 at first visit 2014 2018-09-18 RC SYD EYENET SWEDEN

Visual improvement percentage on patients with VA ≥0,5 after 12 months

Working with systematic quality improvements: Advantages: See what isn’t working in hard numbers. Possibilities for effective analysing of organisations. Are we doing the right things for our patients? Gives a structure to work. Systematic measurements and changes also provide data that can be trusted. Small changes gives large effects in the organisation. Disadvantages: Time and resource intensive. Once the results are known the time required will be easier to justify. Hard to keep teams working well together.

Working with systematic quality improvements: Most difficult: Old routines are hard to change. Important to motivate why we do things. Important to improve quality and not only quantity. Make time to evaluate changes. Involve the entire staff. Prioritise time and limit projects. Making sure everyone feels involved. Lessons learned: Evaluation leads to more improvements. Find the small things. They can make a huge difference. Measure! Test often! Evaluate! Schedule time for team updates as soon as possible. Meeting and sharing is very important. We are great!

”When you come to a wall Throw your hat over it Maureen Bisognano, IHI ”When you come to a wall Throw your hat over it And then go and get your hat” Old Irish adage Susanne Albrecht, RN, Project Manager susanne.albrecht@ltblekinge.se