Learning from Gothenburg model of person centred healthcare
BMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m2738 (Published 01 September 2020) Cite this as: BMJ 2020;370:m2738
- Nicky Britten, professor12,
- Inger Ekman, professor23,
- Öncel Naldemirci, senior lecturer4,
- Mikaela Javinger, patient representative5,
- Håkan Hedman, patient representative56,
- Axel Wolf, associate professor23
- 1Institute of Health Research, University of Exeter Medical School, Exeter, UK
- 2Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden
- 3Gothenburg University Centre for Person-Centred Care (GPCC), Gothenburg, Sweden
- 4Department of Social Work, Umeå University, Umeå, Sweden
- 5Lund, Sweden
- 6Swedish Kidney Association, Sweden
- Correspondence to: A Wolf axel.wolf{at}gu.se
Providing person centred care is a growing imperative across healthcare. The core component of person centred care is the co-creation of care through partnership between patients, their families and carers, and health professionals.1 While much of the recent literature has focused on why we need to change to a more person centred approach with greater involvement of patients and the public in health and healthcare, little information is available on how to do it and whether it makes any difference. Over the past 10 years a model of person centred care has been studied and implemented in Sweden and has shown promising results. By providing practical insights from a successful initiative that has spread both nationally and internationally, we hope to offer lessons for readers elsewhere.
Gothenburg framework
The University of Gothenburg Centre for Person-Centred Care (GPCC) is funded by the Swedish government as part of a national initiative to stimulate research at Swedish universities. The government expects the centres it funds to do high quality research and to use this knowledge to change clinical practice. A multidisciplinary task force based at the university wrote a funding proposal with the goal of supporting cost effective, sustainable, and high quality healthcare. The proposal aimed to tackle the lack of engagement with patients’ own capacities, experiences, and goals in both research and clinical practice. It specifically focused on the paucity of controlled clinical trials in person centred care, the ethics and philosophy of the patient as a person, and the need to move research into everyday clinical practice. The centre was inaugurated in 2010 and includes health professionals and researchers from several disciplines, as well as a “person council” for patients and their relatives and carers. The council includes 12 adults with a range of long term health conditions. From the start, the stakeholders had a clear vision about developing and testing the framework in controlled trials, as well as supporting the adoption of person centred care in different healthcare settings. The task force wrote a consensus white paper which set out the three routines in the partnership referred to as the GPCC framework, derived from best evidence, experience, and practice (box 1). It is based on an explicit ethical approach that combines the relational aspects of collaboration with facilitating structures. The approach acknowledges the patient with needs but also as a capable and resourceful partner with expert knowledge about their everyday life, goals, and motivation. It has some similarities to the NHS England policy on personalised care and support planning.5
Three routines of the Gothenburg framework 23
Initiating the partnership—narratives: The first routine entails eliciting the patient’s narrative and their goals. These are goals arising from everyday life—for example, the wish to return to paid employment or taking walks. This involves listening carefully to the patient’s story to understand their condition, their capabilities, and resources as well as obstacles to achieving good health, giving due consideration to diagnoses and treatments.
Working the partnership: The second routine uses this narrative or series of narratives with the patient and possibly their carer(s) as the basis of partnership to co-creating a personal health plan consistent with identified resources and barriers and combined with medical and health research evidence. This partnership is intended to support the patient’s self-efficacy and self-management by paying attention to their own priorities and building on their capabilities.
Safeguarding the partnership—documentation: The third routine entails documenting the health plan, adapting it to changes in the patient’s goals and/or other circumstances over time and in different settings—for example, when moving from secondary to primary care—to support continuity of care.4 It is documented in the patient’s record, which is accessible for the patient either in paper form or via the national patient accessible electronic health record.
Putting research into practice
Over the past 10 years implementation programmes have started in Gothenburg and have spread to hospitals and primary care settings all over Sweden. The programmes build on co-production between clinicians, patients, researchers, and managers. A series of clinical trials was designed to compare the person centred care interventions with usual care, and these have been done in a range of clinical specialties, including primary care and social care settings. For those in the intervention arm, the clinical trials provide deliberate and emergent strategies to help professionals create person centred partnerships with their patients. These strategies were co-created with professionals and patients to ensure relevance to the setting and specialty.
The early trials were supported by a 10 week education and implementation process6 that was tested in five hospital wards in Gothenburg during 2012-14 (fig 1) and later in other settings. The process was influenced by Kotter’s change management ideas7and the notion of deliberate and emergent strategies—that is, both top-down and bottom-up approaches.8 It was co-designed with the management team, thus providing a change process at both management and individual levels. The management team strategically selected groups of participants representing different layers and roles in the organisation (for example, a ward) to work autonomously to drive the change process.
Example of the 10 week implementation programme/process tested during 2012-14
Outcomes and evidence
Since 2010, more than 20 studies have been published based on 15 controlled clinical trials (10 randomised controlled trials, 5 quasi-experimental design studies; see table 1) in 11 different disease/clinical areas within primary care and secondary and tertiary settings; a total of 2610 patients were enrolled. In each study the intervention was guided by the person centred care framework, using the patients’ goals and resources in care planning. Person centred care requires ongoing and systematic engagement and co-creation, adapted to each patient and each context. Care plans need to be discussed and, if necessary, revised on a continuous basis. The intervention has evolved as it has been adapted to different patient groups and clinical contexts.
Gothenburg Centre for Person-Centred Care clinical trial: main trial data of primary outcomes
Nine of the 15 controlled trials showed significant effects in favour of the GPCC intervention in a range of outcome measures in the ITT or PP analysis (table 1). Outcomes from these trials were increased self-efficacy1319252627; improved experience of health111720; improved satisfaction with care10; improved symptom control1720222829; improved physical function/capacity11172021; improved activities of daily living24; fewer chronic heart failure/chronic obstructive pulmonary disease related deteriorations13; improved discharge planning30; shorter length of hospital stay232431; and cost saving.32 In six trials results were not significant in the ITT analysis (no data on PP available).91112141516
Over time, the outcome measures in these trials have developed from mainly objective measurements into combined objective and subjective measures, such as patient reported outcomes and process oriented outcomes. In general, it seems that the more open and unhurried communication offered by the framework gave hospital patients both information and confidence about co-creating the care process and managing their own problems. This led to better understanding of the discharge process and readiness to return home with a greater sense of self-efficacy. The studies were not blinded; it was impossible to blind professionals or patients to the intervention as it required active participation of both parties. As a complex intervention, composite outcome measures were sometimes warranted.
Although patients were engaged in designing several studies,15192324 they were not involved in the choice of outcome measures. Trial design requires pre-specified outcome variables, but there is no reason that these variables could not reflect patients’ priorities.
Lessons and insights: managing change by co-creation
Individual barriers and professional attitudes
We have learnt a great deal during 10 years of researching and implementing person centred care. We often hear from healthcare professionals that they already practise person centred care, that person centred care isn’t anything new, or that they would like to practise person centred care but don’t have the time or resources. We cannot agree more: many practitioners are person centred yet are not able to systematise it into a practice that enables person centred care for most patients most of the time, regardless of who is caring for them. The notion of person centredness has been around for a long time, yet we still don’t use it systematically. We cannot talk about person centred care if we are unable to practise it ourselves. This entails co-creating a shared understanding of the barriers, resources, goals, and responsibilities of all those concerned.
We encountered professional attitudes including resistance, lack of understanding of the importance of the ethical approach, difficulty of translating abstract principles into specific practices, and risk of returning to old habits once the training was over.833 These barriers were dealt with by the change management programme already described, leaders who acted as role models, colleagues who supported person centred care, multidisciplinary teamwork, and the flexibility to adapt to patients’ circumstances. Other emergent strategies included lunchtime discussion groups with professionals from different backgrounds to help differentiate person centred care from usual practice, and the use of “ambassadors” to convince unwilling colleagues. We also learnt that you cannot implement person centred care in an effective way if you aren’t person centred towards each other in the care team, which of course includes the patient.
To support the facilitation of person centredness by professionals, GPCC has developed a free online implementation programme in English and Swedish (www.mutualmeetings.org), as well as an educational gaming app for iOS App store and Android Google Play (The Person Centred Care game).
Organisational barriers and strategies to overcome them
Each organisation has to develop person centred care in its own way, which means working closely with professionals and patients, some of whom may already have great success stories about practising person centred care.
Organisational barriers include hierarchical structures and traditional practices governing the roles of doctors and nurses in particular, time constraints, the challenges of transferring new working practices to new or temporary staff, and, in some cases, increased workloads resulting from reduced length of hospital stay. The documentation provides a particular challenge owing to the incompatibility with traditional medical records.833 Clear protocols can help to support and reinforce the adoption of new working practices. Health plans which are tailored to the patient population should be developed.833 Patient and public engagement strategies are pivotal in practice, research, and policy. For an optimal person centred process, researchers, health professionals, and patients should have discussed and agreed the outcome measures as well as using a measure of goal attainment to assess the achievement of patients’ goals.34 We identified three particular successful strategies for tackling organisational barriers.
Firstly, the appointment of designated person centred care nurses to introduce and manage the transition towards person centred care. These nurses became ambassadors for person centred care, facilitating training sessions, reflections, and everyday questions concerning practice, as well as continuous development of the person centred care concept.
Secondly, it is important to implement person centred care within the entire organisation and not just a few wards, to share the burden of increased workload arising from reduced length of hospital stay in person centred care wards. Managers may need to change the patient flow from the emergency room to manage changed workloads. A different inequity, which also needs to be balanced, arises when person centred care wards become more attractive for staff to work in.
Thirdly, it is important to systemise rather than simplify. For example, structured person centred care health plans change the way in which professionals communicate with patients, sometimes using particular techniques such as open questions (“What do you wish to return to?”) as a way of eliciting patients’ goals. Person centred care health plans are written in collaboration with patients and made accessible to them. Patients said they felt informed about their condition and future care needs. It is safe to give patients responsibility for managing their health, even frail elderly patients receiving telephone based interventions. On hospital wards, patients noticed a sense of ease and commented that professionals treated each other in a person centred way.35
In April 2020 a European standardisation project initiated by GPCC was approved as a European standard by the European Committee for Standardization (CEN),36 which aims to facilitate a more systematic and structured introduction of a “minimum level” of patient involvement to support a shift towards person centred care on an organisational and policy level. This standard will support the wider implementation of person centred care.
Conclusions
The work of the Gothenburg Centre provides an evidence base in a range of clinical areas for an ethically based yet practical framework for person centred care. It shows that co-creation of care and person centeredness within the team itself, at the bedside, as well as within organisations is crucial. While the framework will require adaptation to different contexts, clinical specialties, patient populations, and organisational structures, fidelity is underpinned by the ethical approach rather than standardised guidelines. This implies continuity of care and the involvement of different professionals to support patients’ goals. Perhaps the main challenge for those wishing to adopt this framework is to appreciate how it may differ from their own usual care.
Key messages
The Gothenburg framework for person centred care is an example of a complex intervention co-produced with patients that has been trialled and implemented on a national scale.
The framework provides a structure for healthcare professionals, patients, carers, and families to develop person centred care plans that reflect the goals and values of patients and guide future care, also working through mHealth/eHealth.
The change management programme entailed a steering group, change agents, and education and implementation strategies in everyday practice, with deliberate strategies to overcome individual and organisational barriers.
Footnotes
Contributors and sources: All authors contributed to this manuscript. NB, ON, and AW initiated the paper and all authors contributed to the drafting and critical revision. The views expressed are their own. MJ and HH are patient representatives who are actively engaged in experience in debating patient advocacy and patient and public engagement issues. NB was partly supported by the UK National Institute for Health Research Applied Research Collaboration South West Peninsula (NIHR ARC South West Peninsula). This work was also supported by the Centre for Person-Centred Care at the University of Gothenburg (GPCC), Sweden. GPCC is funded by the Swedish Government’s grant for strategic research areas, care sciences (application to Swedish Research Council no 2009-1088) and co-funded by the University of Gothenburg, Sweden. The views expressed are those of the author(s) and not necessarily those of the NHS, NIHR, or Department of Health and Social Care. AW is the guarantor.
Competing interests: We have read and understood BMJ policy on declaration of interests and declare that NB is a member of the scientific advisory board of GPCC and a visiting professor at the Institute of Health and Care Sciences at Gothenburg University. IE was the centre director of GPCC until March 2019. AW has several research projects that are partially funded by GPCC.
Provenance and peer review: Not commissioned; externally peer reviewed.