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Person-centred care in focus for interdisciplinary research centre

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90 million SEK over a period of five years and the establishment of a interdisciplinary research facility focused on person-centred care.

“It´s a welcome paradigm shift for patients and society alike," says Professor Inger Ekman, project manager.

Inger Ekman has every reason to view care research with confidence. One of sixteen applicant institutions in the Care Sciences discipline, Inger Ekman and her interdisciplinary research team were recommended back in June 2009 for a five-year research grant totalling 90 million SEK by the Swedish Research Council. With its programme “Towards Person-Centred Care in Long-term Illness: A Research Core Centre", the purpose is to establish a interdisciplinary research centre within five years with the aim of improving communication between patients with long-term medical conditions and their care-givers.

Göteborg is the leader in Europe

Person-centred care means that the patient´s view of his or her situation in the form of needs, resources, desires and preferences is deliberately used by the care-givers with the aim of streamlining care for both the patient and for society. The Swedish Research Council´s verdict was unanimous on all points, with top marks and exceptional ratings for all aspects of the application. Everything points to the fact that the vision of a research centre will be realised. “The aim is that Göteborg should become the leader in Europe in this sphere, even though we are actually already there," emphasises Inger Ekman.

Interdisciplinary research

The interdisciplinary research that is being conducted will encompass everything from care and medicine to IT and psychology. One important fundamental issue is how best to communicate with patients. “All person-centred care (PCC) is ultimately about communication," says Inger Ekman animatedly. “However, the project will not only be about how to communicate with patients via training and IT, but also about how to reduce pain for patients and how to organise care, among much else."

Inger Ekman also relates that unlike the generally held belief, most people needing care today are in fact long-term cases suffering from chronic problems. “People usually believe that most people require occasional care for infrequent problems," relates Inger, “but actual medical care needs are very different."

Today´s medical and health care are instead dominated by patients with long-term illnesses, often multiple ailments, which means periods of stable condition alternating with periods of heightened symptoms and impaired condition. Despite this, health care is planned to deal with acute medical conditions where the emphasis is on curing specific ailments. Previous research has shown that patients see care as fragmented and confused, and a number of organisations such as the World Health Organisation maintain that person-centred care leads to increased patient satisfaction and more effective care. The fact that research involves the patient in his or her own rehabilitation process is of considerable social research value, and high success potential was something that the Swedish Research Council underscored in its assessment of the application:

“It (Person-Centred Care) addresses the involvement of the patient in the organisation of health care and in their recovery process. The challenge to meet the needs of costly and complex care in persons with long-term illnesses seems to have excellent potential. Given the ageing population and the increase of persons with long-term illnesses this area of research is of great importance in health care and in society at large. The programme is directly linked to obstacles as defined in Swedish society and its health care system. The programme has excellent potential for benefiting health care and society."
Excerpt from the Swedish Research Council assessment (Reg. no. 2009-1088) 

“Our vision is that health services will,
by the coming decade, embody a person-centred approach to care".

From the application entitled “Toward Person-Centred Care in Long-term Illness: A Research Core Centre"

 

New paradigm shift towards patient-focused care

“Michel Focault, the French 20th-century author and philosopher, analysed modern health care in The Birth of the Clinic. Organisation of care and treatment is based on observable pathological processes (objects) and not on how the person describes how he or she feels. Carl von Linné was naturally a major source of inspiration, being the renowned scientist that he was," says Inger. “One anecdote that holds a lot of truth is the one about the old lady who asks her old friend how she is feeling. Her friend replies that she will not know until Tuesday, when she is scheduled to meet her doctor." Inger Ekman relates the anecdote with a glint in her eye but it does also reveal a serious issue: medicine has by tradition been based on the object, that is to say the symptom, while the subject — which involves the patient — has increasingly faded into the background.

“Care has by tradition therefore been object-driven. However, with person-centred care, we are moving towards more subject-driven development. Person-centred care thus marks a paradigm shift from ailment focus to person focus," explains Inger Ekman. “In the care industry, we quite simply need more research into our patients´ own perceptions of how they feel, and that is what we will now be able to get."

Solid experience on which to build further

Research into person-centred care at the University of Gothenburg is already under way within a interdisciplinary network of loosely linked researchers including 55 senior researchers, about 30 junior researchers and more than 60 postgraduate students involved in various research projects. They mainly represent care science and medicine, but the network also includes a number of other disciplines such as technology, philosophy, psychology, pedagogy and economics. So in other words, it is with the aim of developing this already established and ongoing transdisciplinary research that the target now is to set up a new research centre for person-centred care for patients suffering from long-term ailments.

Smoothly functioning cooperation with the health care and business sectors

The research group already enjoys good cooperation with Sahlgrenska University Hospital, Region Västra Götaland and the local municipalities, Swedish players in the business sector and universities in Sweden and abroad. Region Västra Götaland also has unique potential for adding value through an advanced innovation system and well-established cooperation between the regional health care/medical care establishment and the academic world. Both commercial players and health/medical care will be further involved in the new centre. The University of Gothenburg will further reinforce these resources by serving as a node for both commercial benefit and improved care processes and structures. The research centre will continue to create an infrastructure that further reinforces the research by permitting increased interdisciplinary cooperation.

The research process and the generated results will also be integrated into the educational programme at all levels and be conveyed to the public in a variety of ways, for instance via the eHealth system. The new research centre is thus expected to create applied new know-how that may be expressed in the form of new services, products and care processes. Senior and junior researchers within different disciplines develop research programmes in PCC, for which researchers and postgraduate students are recruited. Method development will also be a central component in the formation of this centre.

Symptoms, organisation and communication in focus

The three focus areas of the research will thus be symptoms, health/medical care organisation, and communication/training.

Symptom research means research into the discomforts and difficulties that cause the individual patient to seek help. This research has three focus areas: describe how different long-term conditions are perceived in the form of symptoms, describe the relationship between the perceived sickness (symptom) and the objective pathological processes in the body (signs), and evaluate intervention that eases the symptoms.

Research into health care and medical care organisation describes and evaluates the effects of PCC. In order to improve and individualise health and medical care, the patients are involved and they participate in shaping the goals, care and treatment. This includes components such as organisation of care (inpatient and outpatient care), self-care support, decision support for patients and care staff. The national and international guidelines for treatment of ailments specify how patients are to be treated and cared for but they only provide sketchy guidance on how treatment can be designed for each separate individual. Evaluation of PCC encompasses both subjective variables (such as satisfaction with care and treatment) and objective measurement parameters (cost of treatment duration etc).

Research into communication/training describes, develops and evaluates methods that empower individuals/patients with long-term conditions. They are thus given the necessary preconditions for understanding and taking decisions on their treatment and care. The health-related information approach develops and evaluates the potential provided by advanced communication technology, in the form of interaction between patients and care givers. Health portals and virtual communities are two such examples.

Care research — essential for the future

Inger Ekman relates that natural sciences and medicine blend with one another today; for instance, there are more scientists doing research in medicine today than ever before. Here the Sahlgrenska Academy has long experience of internationally cutting-edge research into the treatment of heart patients through medication, for instance. However, this development has generated negative consequences as regards patient communication, for instance with fewer questions to the patient. And although human beings are so different from one another, they nonetheless often get the same treatment and the same medication.

Over the years, support for medical research has primarily gone to pharmaceuticals. However, as the population´s age rises, so too will there be a greater need to increase research into care. “Closer links between medical research and care research is thus highly welcome," emphasises Inger Ekman. “Based on how things are in reality, it is difficult to understand that care research is not given the same financial backing as pharmaceutical research and preclinical research. There ought to be greater interest in research into how patients regard their condition and their treatment, or into patient education for instance, bearing in mind that a very large proportion of patients do not even bother to collect the medicines they have been prescribed. In this way, society and the pharmaceutical industry lose a lot of money," says Inger Ekman.

Intensive application procedure for world-class care research

Before submitting the research application, Inger Ekman contacted all the deacons at the University of Gothenburg and asked them to inform their researchers that they could get in touch with her if they were engaged in any form of care-related research. What emerged was a group of researchers from a number of different disciplines who joined forces and very carefully read through the application regulations. They then had a thorough discussion on what they already had and what they wanted to achieve, as well as how to achieve it. The aimwas to use the existing proposition to formulate a programme or concept that presents care research at the University of Gothenburg.

From November 2008 to March 2009, Inger and the other members of the team worked very intensively with the research grant application. They identified certain key words from the proposition that were regarded as important criteria, such as long-term perspective/risk/innovation and the notion that the care research was to be of world class. It was noted that there is considerable clinical (patient-related) research at the University of Gothenburg, something on which it was well worth building further.

An over-riding concept was formulated where the person with an illness, and the illness in the person, would be in focus. Importance was also attached to partnership between the care giver and patient and almost all the faculties at the Sahlgrenska Academy were involved. The five-year target was to establish a national Centre of Excellence in care research and person-centred care for patients with long-term needs, and to establish the University of Gothenburg as the leader in care research in Europe.

Clarity — a success factor

It was all about profiling, truly learning about what was wanted and clarifying this in the application. Inger regards clarity as important. “We were meticulous about everything, both on the broader canvas and also with every little detail. The Swedish Research Council advised us to think conceptually, which got me to appreciate the importance of presenting the entire group as a homogeneous unit in our application. We had lots of discussions and concluded that not all science disciplines could be included. We invested a lot of effort in clearly showing which research is being undertaken and the possible synergies that may emerge from the future establishment of a research centre."

Considerable social benefit from person-centred care

Research is among the most important things Sweden can do to boost its competitiveness in the long term and contribute to sustainable growth. And improving care efficiency will not only benefit the patient and care giver — person-centred care will also make a major contribution to society in general. With a high degree of “self-care", the patient becomes a partner and participates in his or her rehabilitation in a totally different way compared to today. It is the person rather than the pathology that is in focus, which means that health and medical care will get tools to integrate pathology, culture and individual experiences in care and treatment. Health care costs will also drop since care will be provided where the person is and not where the hospital or clinic is located, for instance through developments in IT systems or organisational and financial models.

Inger Ekman already has considerable experience from research with patients suffering from heart problems where she has proven that if patients with chronic heart problems learn to ease their symptoms themselves, they do not need to visit the emergency room as often. This benefits both the patient and the health care system.

Together with Professor Karl Swedberg she has researched the effect of deep and slow breathing in a group of patients suffering from chronic heart problems and breathlessness. The aim was to assist the patients towards self-help, that is to say give them tools they could use when they note the symptoms. There are effective medicines to deal with heart problems, such as ACE inhibitors, beta blockers and A2 inhibitors. They protect the cardiac muscle and have help ease the symptoms of many patients, but one group of patients continues to suffer from breathlessness despite treatment. If a patient learns to control his breathing with the help of yoga techniques, he might be able to suppress this breathlessness, and this is one excellent practical example among many of how both patient and society can benefit from person-focused care.

Successful interdisciplinary approach

The critics of transdisciplinary research feel that it is not beneficial to mix the various disciplines. However, Inger feels that this approach can promote added depth within one´s own discipline at the same time as methods and perspectives from others enrich, challenge and enhance both the research and the discipline itself. “We did not really know what the result of our application would be," says Inger. “Of the total of 16 institutions in Sweden that submitted applications in the area of Care Sciences, our project from the University of Gothenburg was the only one that received unanimous support, and that is very gratifying."
The Swedish Research Council also highlighted the importance of the research project´s transdisciplinary approach, offering some highly appreciative comments in its assessment:

“The CVs of the programme leaders are excellent and they represent a substantial breadth of expertise. Good experience has also been built in the area of performing large studies. Collaboration between the University of Gothenburg, the hospital, primary health care as well as the county council and the business sector seems well developed. The university has given priority to this area of research and has already invested in the field, so there is already considerable know-how in this area."

The Swedish Research Council too had no doubt at all that the project “will add to scientific knowledge internationally." The group of researchers already enjoys good national and international cooperation and the idea is that its research will be of absolute world class.

One highly interesting cooperative project has been ongoing for some time now with Shanghai, Göteborg´s sister city, where person-centred care is integrated with modern western medicine and traditional Chinese medicine. China is currently facing major reforms in the care sector. “China has a care system similar to the one we had back in the 1960s. This is one area in which we have a lot to teach them," says Inger Ekman.

Many strings to her bow

Not only will Inger Ekman now be director of the new centre for person-centred long-term care, she also has several other strings to her bow. She trained as a nurse, did her postgraduate studies at Umeå University and has a strong interest in health anthropology. Inger relates that she applied herself to do her postgraduate studies in Umeå. “My postgraduate studies in care in Umeå gave me a secure, solid foundation in theoretical understanding of the human being as an individual and a person. It is this foundation that has continued to guide me in my later research," reveals Inger.

There is a lot for Inger Ekman to get done ahead of the inauguration of the research project in spring 2010. For one thing there is a well-deserved autumn vacation in Menton, France. And a lot of attention is stolen by Edwin, Inger´s first grandchild, who is just a few months old.

Well on the way to a new care paradigm

It really feels as though Inger Ekman has a natural, genuine dedication and applies warmth and enthusiasm to everything she does. Improving and caring also appear to be her driving forces, both professionally and in her private life, whether we are talking about children or pets, work or her home. Bearing in mind that she and her research team at the University of Gothenburg have already started work on their vision of moving care to a new paradigm within ten years, there is every reason for patients too to regard the future with confidence.

Text by Helene Jaktling