How can we improve primary care for people living with chronic diagnoses? Chronically Engaged is the result of a collaborative project between the county councils of the regions Sörmland and Värmland in Sweden; Experiolab, Swedish national centre for patient-focused service innovation; and the experience design firm Doberman.

Sweden provides universal healthcare for its residents. The costs of chronic disease consumes the lion share of Sweden´s health care budget. As Swedes live longer and longer, the number of people living with chronic disease is constantly increasing, along with the costs. Several studies have identified that increasing person-centered approach has the potential to both affect major economic impact as well as reduce untold suffering. This will require both new ways of working as well as new solutions to support both staff and patients in the new model.

The overarching goal of the project was to help move the whole health care sector forward in this shift by creating great examples of how service innovation and design methodology together with a higher degree of patient participation and involvement can lead to radically improved care, increased adherence to national clinical guidelines and early diagnosis. Besides driving design method adoption and new patient centred understanding within the health care centers, the project resulted in five new design solutions meeting the challenges of chronic disease - The Appointment Guide, The Treatment Guide, The Conversations Cards, The Diagnosis Day and The Chronic Pain Nurse.

The solutions both radically improve person-centered culture as well as increase adherence to national guidelines, despite the steep challenges of intense time pressures, entrenched behaviors and strongly held traditions. Patients have expressed enormous gratitude, some going to far as to say that it has changed their lives because it has changed their perspective on both their relationship to their diagnosis and the role of the health center in managing it. One participant said: "I wish I had this when I got the diagnosis".

Considering the patients and their needs being central to the project a highly inclusive process was designed. The project ran through five steps: Prepare, Capture, Understand, Improve, Re-new.

PREPARE

People with chronic diseases touch many parts of the healthcare system. For many, however, local healthcare centers are their primary touchpoint for managing their disease. Covering the full dozen of chronic diagnoses that have national guidelines would be unmanageable in a single project. The project therefore focused efforts on two healthcare centers and on one chronic diagnosis per center: COPD (Chronic Obstructive Pulmonary Disease) in the city Eskilstuna and Chronic Pain in the city Karlstad.

The specific the goals of the project were honed to: finding opportunities to make the interface between healthcare centers and those living with chronic diseases more person-centeredincreasing the participation of people with chronic diseases as well as staff in both the process and the resulting solutionscreating practical solutions that bring lasting change to both patients and staff.A multidisciplinary team including both patients and staff was established at each healthcare center. Qualitative interviews was selected as the primary method for gathering user insight. Prototyping was selected as the central method in the improvement process.

CAPTURE & UNDERSTAND

During the collaborative process involving the design team from Doberman and the two county councils, staff and patients in primary care in Eskilstuna City respectively Kronoparken in Karlstad worked together to identify problem areas and conduct research, bringing to the surface unmet needs and problems to solve in order to improve the experience. In every meeting and workshop there was always at least one patient participating, often several.

The Service Design-process gave insights into the everyday life of people with chronic diseases and the many possibilities of improving the health care experience for these people. Even then in a Service Design-process is all too easy to assume that the project team knows what is best for the people it is trying to help. In this project we invited groups of people with the diagnoses to prioritize what areas we should focus our improvement efforts on. It was a humbling experience for the staff and designers as they in fact chose to prioritize differently.

IMPROVE & RE-NEW

It became clear that even simple improvements in the interface between patients and staff could make an enormous impact on increasing person-centeredness. Doberman and the team started with creating 7 prototypes addressing different opportunities. Each prototype was tested in situ at the centers, then revised, then tested again. Some went through as many as five iterations.
The healthcare center staff took on more and more responsibility and ownership of the design over time. The final prototypes from Doberman was produced in a format that the staff could continue to evolve themselves.

RESULTS AND LEARNINGS
The project resulted in new solutions, method adoption and new understanding within the health care organization.

NEW SOLUTIONS

The prototyping resulted in five different solutions that support and drive person-centered care, both for staff and patients.

1. Appointment Guide

A simple form used before, during and after an appointment at the healthcare center. E-mailed before the appointment, the first half of the guide prompts the recipient to articulate their feelings and needs. At the beginning of the appointment, this helps calibrate the agenda. At the end of the appointment the staff, often a doctor, and the person with the diagnosis document what was covered in the meeting and next steps for each person in the room.After the appointment, it becomes a reference document and a to do-list.

2. Treatment Guide

A simple folder summarizing both the most relevant information on a specific chronic disease and the steps and treatments available to a person with the diagnosis. Based on national guidelines, it describes treatments at the specific healthcare center as well as outside, along with contact information and clear calls to action. This helps the person understand the process going forward and what it could mean to them, as well as empowering them to seek the treatments they want, rather than relying on the healthcare center. It also helps the person explain to people around them, something that can be emotionally challenging.

3. Conversation Cards

A deck of cards with images and words about disease, care and daily life that function as a stimulus to talk about potentially embarrassing, difficult or scary topics. Used in an appointment, where time limitations are often severe, it can accelerate the conversation to topics that might not otherwise surface. It also helps show what kind of services and treatments are available at the healthcare center and elsewhere.

4. Diagnosis Day

A meeting to meet other people with the same diagnosis, get further medical information and updates on the latest research, hear about new and existing treatments, ask questions and discuss together. The length is from two hours to a full day. This is loosely based on existing forums for COPD but with several important differences. Among others: serving both newly diagnosed and those who have had the diagnosis for a long time, segments for people close to the ones with the diagnosis, the healthcenter as host. The COPD-sessions are hosted by patient organisations, which our research found repels some people.

5. Chronic Pain Nurse

A dedicated specialist nurse. By concentrating tasks as well as resources on this person instead of spreading it across many, two things happen. S/he becomes the knowledge node at the healthcare center by having the deepest and most updated information about the diagnosis and its treatments and S/he becomes the main point of contact at the healthcenter for the people with the diagnosis. Thus s/he starts providing both continuity in the relationship (the single biggest pain point) as well as the best available care through improved knowledge.

METHOD ADOPTION AND NEW UNDERSTANDING

The extensive use of Service Design methodologies and the degree and scale of involving the patients in the process and giving them the opportunity to shape their own solutions makes the project unique in this sector. The project generated a large amount of new learnings.

The success of using design in the healthcare center context and the sharing and learning of the design methodology and practice among the project participants proves it a powerful tool for moving health care toward person-centeredness.The work at the healthcare centers continues after the time-frame of project in many different ways. The centers have adopted several of the patients-involvement methods and are continuing to test and improve the solutions in the form of new prototypes.

Last but not least, the project created a better understanding and knowledge of the situation and needs in general of people with chronic diseases. We are actively working toward creating new projects for applying these learnings and solutions to other chronic diagnoses and at greater scale.

SCALE

Using service design to involve the patients in the improvement and decision making process was considered highly successful and will also be key in the to continuous work within the frame of the national initiative around chronic diseases going forward. It will hopefully inspire both individuals and organisations to adopt both the methods and solutions to affect change where they are.
The sharing of learnings from the project is happening on an ongoing basis across the country as well as internationally.

Both healthcare centers are currently initiating an initiative to spread both the methods and the solutions to the others in their counties and ExperioLab is focused on ways to spread them at the national level. Our goal is to improve the daily lives of as many people with chronic diagnosis as possible.