Empowering patients to need less care and do better in Highland Hospital, South Sweden

Given the waiting lists in 2001, we decided to undertake a fundamental review of the values behind the relations between our patients and the healthcare system. In particular, we analysed our service from a patient perspective. This analysis suggested to us that we needed to redefine the roles of the patients to give them greater personal responsibility for their health. As we redesigned the unit, we also had to find a way to monitor quality, as it was unacceptable to both patients and the hospital that quality should deteriorate and we realised that a shift in attitudes like this (which can be characterised as a paradigm shift) would be criticised. It was essential to us to prove that quality was at least preserved and hopefully improved.

We knew that the problems were deep-set in the system – indeed staff were just as frustrated as patients themselves, who were understandably dissatisfied at having to wait for treatment. Moreover, making patients wait probably had adverse effects on their health, sometimes resulting in deterioration of their condition and causing worse flare-ups and longer hospital stays than would have occurred if care could be delivered at the proper time. Also patients experienced insecurity and uncertainty, further diminishing their quality of life and health experience.
    
We realised that, traditionally, meetings between the physician and the patient, were, by their very nature, repressive. The physician was the ‘top dog’, his/her views were considered to be the central element of the process. Both the patient and the other staff were simply seen as being supportive to this central process. We decided that this had to be changed - we had to create a setting where the team and the patients are partners and where the patients are responsible for their own health. This view actually has a deep impact on the way we are working, as the care team has to negotiate with the patients instead of ‘ruling’ over them. So we designed a team where all participants, including the patient, would be involved, using their individual competences. We wanted each participant to feel in charge of at least part of the process. The patient is actually in the middle of two teams – the ‘community team’, made up of their family and friends and support system, and the ‘medical team’, the staff here in the hospital. The hospital team’s role is to support the patient in his/her “real” team, where the patient expects to be a well functioning individual, with full control over their life (see figure 13).

The first thing we realised in the analysis was that it was essential to change the patient monitoring system. The underlying principle had previously been that the healthcare system tried to monitor the patient’s health status through regular visits, instead of adapting the system to meet the patient’s actual needs. We realised that we were actually doing too much for some patients, and doing too little for others. At the same time, we were unable to guess when the right time to intervene was – this was when we realised that patients actually knew better than us when their disease was getting worse. This made us realise that we actually harmed some patients, as we could not deliver help at the time the patients actually needed care (partly because of an overcrowded system, the capacity of which was often used up in efforts that did not create real value for the customers). We therefore redesigned the unit to set up a team-based healthcare delivery system in which all participants, including our patients, put their individual competences to use in a proper way. This immediately helped us to cut out some of the inappropriate work which had previously been done, even though it had not produced any real value for the patient.    First, we decided to completely change our contact system. Depending on severity of the disease, need of monitoring AND the wishes of the patients, we stratified patients into several groups, each of which would be treated differently, rather than forcing all of them into the same system, as we had done previously.

We were aware that many of the annual visits were of little use – at scheduled visits, we often found patients had no obvious health problems. These visits took up a great deal of our time on the ward, did not create any real value to the patients and, of course, were stressful and disruptive to the patients. Moreover, most of the flare-ups of the disease took place during the rest of the year – patients should, of course, have contacted us when flare-ups occurred, but we didn’t have appropriate routines in place to encourage that (nor the time to deal with such contacts, given that we were constantly dealing with the ‘well patients’ who had come in for their regular check-ups).

Consequently, patients’ flare-ups were often more serious than they would have been if they had been picked up in time. Indeed, the very worst case can occur where a flare-up occurs when the patient has already made an appointment for some time in the future and decides to wait for that appointment, rather than contacting us. This will often allow the flare-up to become worse – in this way, having a scheduled appointment will actually harm the patient.

Consequently, we moved to offering the group of patients with a stable condition (excluding patients on heavy medication, those with learning difficulties and those (few) patients who wanted to meet the clinician) an annual phone contact with a nurse and the opportunity to contact the surgery whenever they felt they wanted to discuss their condition. Instead of coming in to the ward once a year for a check-up, patients are asked once a year to send in a blood test and to fill in a short form asking quality-of life questions (using the SHS – Short Health Scale). Then a nurse contacts them on the phone for a detailed conversation, covering their overall health condition, any troubles since the last contact, their potential need for prescriptions and any other issues the patient wants to discuss. They are offered a visit to the doctor, if they want it. However, they are encouraged to get in touch with the unit immediately if any signs appear that the disease is getting worse or if they become worried for any other reason. When patients make these unscheduled calls, the nurse can recommend self-care, where it is suitable, or offer an appointment to see the clinician at the hospital within three days. (Patients can also contact the clinic via e-mail, if they prefer).

Of course, this approach wasn’t appropriate for all patients – it applied to that half of the patients, whose disease was in a stable condition but it wasn’t suitable for patients who were receiving treatment for an unstable condition with immunosuppressive drugs or for patients who could not be considered responsible for their own actions – these were asked to make their traditional follow-up visits to the clinician. Even patients who desired to meet the clinician had a “traditional” follow-up, although actually only a few patients choose this follow-up, as the prime goal of most patients is to stay well – not to see a doctor.

A further change we made was in the way we worked with in-patients. We realised that we seemed to apply a different set of values in the ways we treated in-patients compared to out-patients. Instead of the medical team ‘doing the rounds’ every morning, and inspecting each patient in their bed, discussing their case ‘over their heads’, we have reversed the procedure. We invite each patient to come to our team room for a planning meeting, where we can put up the relevant charts, X-rays, etc. relevant to their case. Here they can interview us about what has changed since our last discussion, how they feel, what they are worried about and what we are suggesting might be done. What we do is actually to create a scenario which is designed for negotiation instead of top-down prescription.

In order to ensure that this approach to treatment did not decrease the quality of care, an extensive performance measurement system was used, covering the medical results, the patients’ health and illness experiences, waiting times for referral visits and waiting time for endoscopic procedures. These involved questionnaire investigations of the patients’ experience of care (both at home and as in-patients), and, in order to monitor medical results, use of our computerised medical register of diagnoses, simple biochemical markers and patients’ experience of health. We also did one-off investigations, e.g. analysis of our pharmacy records to assess patients’ adherence to recommended drug treatment.

Health condition: The patients self-assess their health on the Short Health Scale form, reflecting four aspects of their health - symptom burden, function, experience of anxiety and general condition. Positive results are reported by the following proportions of our patients:

• symptom burden : 98% for ulcerative colitis, 96% for Crohns disease ;
• functionality in daily life : 96% for ulcerative colitis, 86% for Crohns disease
• anxiety : 94% for ulcerative colitis, 90% for Crohns disease ;
• general health condition : 95% for ulcerative colitis, 95% for Crohns disease.

Satisfaction: Patient and staff satisfaction are measured by questionnaire. Both groups have reported high levels of satisfaction with the redesigned care system.

Availability: Referrals are registered in a computerised system and the number of patients coming for revisits in the ward is recorded manually – all data is presented once a week at the clinic review meeting. The goal is to have no waiting lists for re-visits, less than 14 days waiting time for referral patients, less than 3 days waiting time for urgent visits and immediate availability for all phone contacts. In practice, there is now no waiting list for planned revisits nor for urgent visits. Telephone availability is good – 93% of incoming calls are answered within 3 minutes. For referral visits, the average waiting time for nonprioritised referrals in 2006 was 23.5 days. (The first 7 days is taken up in handling the referral, before it is passed to the clinic, so the actual time taken from when the referral is made to the clinic until the patient actually visits us is only 16.7 days on average).

Adherence to drug treatment: Available international studies show that adherence to recommended treatment with 5-ASA-preparations (an important maintenance treatment) is as low as 30 – 50%. Our records show 68% of patients with total ulcerative colitis have taken out from the pharmacy more than 70% of their prescribed dose, and for left-sided colitis the figure is 58%.

Medical: The number of hospitalisations of patients with inflammatory bowel disease decreased 48% during the period 1998 – 2005,  compared to the nationwide decrease of 4% reported by the National Board of Health. Our clinic has moved from above the national average of in-patients per 100,000 residents to being almost half the national average during this period (see figure 14). The number of unscheduled visits of patients with flare-ups in their condition decreased from two a day in 2001 to two a week in 2005, mainly, we believe, because patients are taking more responsibility for their own care and therefore are contacting us much earlier when there is a flare-up in their condition, before they become really ill.
   
Medical quality: We have used as an important medical target that 95% of the patients should have a Hb > 120 – this has been achieved for 97% of patients with ulcerative colitis and for 94% of patients with Crohns disease. We know that the use of haemoglobin levels as a quality indicator is not widely accepted; however, we know from several studies that anaemia frequently follows on from IBD – indeed, in some studies 30% of patients are anaemic. The number of patients with anaemia should therefore be an indicator of the unit’s ability to discover and treat anaemia, so that being able to keep this number low is probably an indicator of quality.