Program in English

During the day, we will hear about patient-driven innovations, how patients can improve healthcare and how research can be improved with the help of active patients.

09:00 – 10:00

Registration with coffee/sandwich and activities in the exhibition

10:00 – 11:00

Opening of the conference (mostly in Swedish)

Moderator Erik Blix together with Sara Riggare, coordinator of the project ”Spetspatienter” and Karin Dahlman-Wright, professor Karolinska Institutet and chair of the project Spetspatienter project council.

The Patient of the Future is Already Here! (in English)

Dana Lewis, patient researcher and innovator with type 1 diabetes who linked her continuous glucose meter and her insulin pump using a Raspberry Pi mini computer and open source software. Currently she also leads and participates in several research projects.

11:00 – 12:00

Lead User Patients Improve Healthcare! (in Swedish)

Åsa Steinsaphir (User influence coordinator North Stockholm Psychiatry) talks about her work and her own experiences as a patient in psychiatry.
Panel: Peter Carstedt (MOD – more organ donation), Karin Båtelson (Swedish Medical Association), Lisbeth Löpare-Johansson (Development Director Region Norrbotten and Coordinator SALAR). Also discussion between, among others, Lise Lidbäck (Chair Neuro), Kim Nilke Nordlund (Secretary General of The Swedish National Organization for Young Rheumatics), Peter Graf (CEO of the Healthcare Company Tiohundra), Ida Kåhlin (chair of the Swedish Association of Occupational Therapy) and Sofia Wallström (Director General Health and Social Care Inspectorate).

12:00 – 13:00 Lunch and activities in the exhibition

13:00 – 13:40 Parellel sessions, choose one of the following

A) Good examples (mostly in Swedish)

Joel Elinder (design student Lund University) tells us what a banana ruler is and how to use it.
Anders Ekholm (chairman of the Greater Stockholm Diabetes Association) presents a project where artificial intelligence is used to facilitate for people living with type 1 diabetes.
Katrine Kirk (Patient Ambassador Denmark) tells us how she teaches medical students to listen to patients in new ways.

B) Together across sectors (workshop, in Swedish)

Anna Nergårdh, Niklas Eklöf and others from the Inquiry Good Quality, Local Healthcare want to discuss patient contracts, SIP and My personal plan. What would you like as a patient / relative of care? How interactive should it be? What information should both I and the healthcare provider have access to? What do I choose to share and what should I see from the care? Patients / relatives, municipality, region and civil society – how do we work best together?
Workshop host: Lotta Håkansson (chairman of the Swedish Rheumatism Association).

C) Upcoming report: ”Spetspatienter – a new resource for system improvement” (workshop, in Swedish)

Join in and discuss how the involvement of active patients and their relatives can make the health care system better and safer for the next patient.
Moderators: Anna Krohwinkel (Leading Health Care) and Hans Lindqvist (QRC Stockholm).

D) Patients want to contribute – is healthcare ready? (in Swedish)

Digital services and medical technology are dramatically reshaping the health landscape. Today, home monitoring with digital services is one of the more compelling areas. Patients find that the development is positive and increasingly want to monitor their health digitally, share their results with others in the same situation and with their caregivers to get better care. At the same time, patients believe that healthcare does not utilize the power and ability of patients and their relatives.
Participants: Mia Tillgren Moreau (AbbVie), Anne Västgård (Roche Diagnostics), Ina Caesar (PwC), Mats Wennberg (Apoteket AB) and Jesper Olsson (Tamro).
Workshop host: Sineva Ribeiro (Chairman of the Swedish Association of Health Professionals)

BREAK

13:50 – 14:30 Parellel sessions, choose one of the following

E) Lead User Patients Improving Research! (in English)

Sara Riggare (Project Spetspatienter and Karolinska Institutet) will present some examples of how lead user patients work to improve research. She will also discuss with Mattias Millbro (chair Neuro Young with MS) and Jan Hillert (professor Karolinska Institutet, Karolinska University Hospital and register holder Swedish neuroregister).
What happens when patients and researchers start collaborating in new ways? Panel: Dana Lewis, Jenni Nordborg (Government Coordinator for Life Science), Henna Hasson (Professor Karolinska Institutet) and Staffan Arvidsson (FORTE).

F) Together for mental health! (workshop in Swedish)

Workshop on mental health with Anna Nergårdh, Niklas Eklöf and others from the Inquiry Good Quality, Local Healthcare. Patients / relatives, municipality, region and civil society – ideas for the future. Healthcare, corporations and civil society in support of mental health. Share your examples and your expectations.
Workshop host: Ida Kåhlin (chair of the Swedish Association of Occupational Therapy).

G) Innovation & service design initiated by patients and their families! (workshop in Swedish)

How can patients and relatives innovate to provide services that improve for others in similar situations? You will hear about two initiatives that are based on the needs of patients and relatives: Kraftens Hus, which is a meeting point for cancer sufferers in Borås, and the Dementia Guide, which is a service for relatives of people with dementia.
Moderator: Henrik Ahlén, (CGI).

H) When selfcare is the only way (in Swedish)

Two patient associations present: Karin Högvall (Rare Diseases Sweden) talks about the project Learning Together and Margareta Haag (Swedish Edema Association) talks about challenges with a diagnosis where there is evidence of treatments but patients do not receive them.
Moderator: Sören Berg (WED Association).

14:30 – 15:00 Coffee and activities in the exhibition

15:00 – 16:00

Lead user patients improving their own health – and others (partly in English, partly in Swedish)

Thomas Blomseth Christiansen (Totti Labs) and Hanna Svensson talk about how they use self-tracking to improve their own health, independently and in collaboration with healthcare. Gary Wolf (founder of the Quantified Self movement) explains how using individual health data can be used to improve health for larger groups.

Panel discussion (in Swedish): How can the work that Lead User Patients do to improve their own and others’ health be better supported at the system level?
Panel: Anders Ekholm (Greater Stockholm Diabetes Association and Institute for Future Studies), Jean-Luc af Geijerstam (DG Agency for Health and Care Analysis), Mari Lundberg, (Researcher, Physiotherapist and Head of Education and Implementation at GPCC) and Marianne Larsson (Innovation Skåne).

16:00 – 17:00

Reflections of the conference (in Swedish)

The moderator Erik Blix discusses the event with Anna Nergårdh (Inquiry Chair for Good Quality, Local Healthcare) and Madeleine Beermann (former chair of Young Rheumatics).

Music and Health (in both English and Swedish)

Are music and health connected? How can you conduct research on music and health? Join us in this interactive lecture where we all get to see how music affects our health.
With Rickard Åström, musician and researcher.

Wrap-up (in both English and Swedish)


The conference will be concluded by Sara Riggare and other participants in the project Spetspatienter. What are the next steps going forward?