Rare interest in the rare

Exactly 50 years ago, Anne-Grete Strøm-Erichsen became a "different kind of mum". Early on, it became clear that her young daughter was not developing as expected. The family travelled to hospitals at home and abroad before someone finally managed to diagnose Prader-Willi syndrome. In Norway, an average of 2-3 children are born with this rare diagnosis every year.

For those with rare diagnoses, specialists are also particularly rare. Perhaps there are only one or two in Norway, and sometimes only a few in the world, who are familiar with a rare diagnosis. Strøm-Erichsen believes that a collaboration tool such as the one Dignity Care wants to develop can play a key role in ensuring good follow-up.

- Not just for the team around you in your own municipality and region, but to enable you to involve those with the most knowledge about the diagnosis - no matter where in the world they are located, says Strøm-Erichsen.

Working for register

Strøm-Erichsen is passionate about making whatever knowledge there is about rare diagnoses and conditions more easily accessible. As Minister of Health, she was engaged in facilitating increased use of health registers, and in recent years she has been involved in establishing registers for rare diagnoses.

- The Cancer Registry is recognised internationally for its quality and its contribution to cancer treatment. For rare diagnoses, it is perhaps even more important that information from medical records is shared through the registry, so that methods and experiences can be shared and reused. Even if a single diagnosis is rare, there are many thousands of rare diagnoses in total. This gives us perhaps tens of thousands, if not hundreds of thousands, of patients with rare conditions. When we submit medical records, relevant information should go directly to the register so that we can develop treatment and care that is increasingly effective, says Strøm-Erichsen.

Has been the coordinator herself

Based on her own experience, she knows that coordination is particularly important for patients with rare disabilities, because they often come with side effects that can lead to long-term and complex illness. She also knows that it is important to work preventively, as many people have great difficulty expressing their pain and other ailments themselves.

- I have definitely and to a very high degree been a coordinator and liaison in the health service on behalf of my daughter. If you have a disability, you usually have several other diagnoses and need follow-up involving many different specialities. So, every time you go to a doctor, you have to tell a lot, Strøm-Erichsen explains.

She hopes that a good collaboration tool like the one Dignity Care wants to develop can contain "best practices" for how healthcare professionals can succeed in, for example, getting a blood test and administering medicine or other treatment to patients with special needs.

- If our daughter ends up in hospital, we will still have to be there for her, says Strøm-Erichsen.

Launched the collaboration reform

Anne-Grete Strøm-Erichsen was a minister in the Stoltenberg II government on three occasions between 2005 and 2013. First as Minister of Defence, then as Minister of Health and then back as Minister of Defence again. She has a degree in IT engineering and served as Minister of Health and Care Services from 2009-2012. During this time, she focussed on quality work, patient safety and the use of ICT in the health sector. She started work on several white papers. These included "One citizen - one medical record", which was presented by her successor Jonas Gahr Støre in 2012. She was tasked with concretising, drafting legislation, and introducing the Coordination Reform launched by her predecessor Bjarne Håkon Hansen.

Strøm-Erichsen could have retired with a clear conscience several years ago, but still has hectic working days in an everyday life that is still characterised by health and ICT. She holds several important board positions in the field, including in Kernel, which is the parent company of two of the partners in Dignity Care: DIPS and AIDN.

Wanted to avoid the "throwing balls"

- One of the reasons why the government I was in launched the coordination reform was because so many patients were - and still are - tossed between home care services, specialists and GPs. I'm very passionate about interdisciplinary healthcare communities where a wide range of healthcare professionals can provide services, follow-up and aftercare to the patient. Not everything requires follow-up by a doctor but can easily be taken care of by other healthcare professionals, Strøm-Erichsen points out.

She is not impressed with the results of the Coordination Reform so far and recognizes that there are many reasons for this.

- Even though the previous government was concerned about the patient's health service, they were not very good at following up on coordination between the two levels. The Coordination Reform is nothing if we don't have electronic systems to support it. The information must follow the patient and make it possible for everyone involved - both in the specialist and municipal health services - to work together better, she says.

Seamless offer for chronically ill people

- Providing a better and more seamless service for chronic patients was what the coordination reform was really all about. We have succeeded in some areas, but there is still a huge potential to make this much better. I think we need to develop more services closer to the patient, says Strøm-Erichsen.

For example, she is familiar with projects involving remote follow-up and home hospitals, where it is possible for patients to receive advanced nursing and care at home, thus avoiding frequent hospitalisation.

- As a nation, we must succeed in linking services more closely to the patient. We simply don't have enough healthcare professionals to continue with current methods. Easy access to up-to-date information can provide better follow-up for patients, and even more treatment at home. In some areas, such as dialysis, we have come a very long way and many patients have significantly improved their quality of life as a result of innovative projects in the health service.

Dignity Care's starting point, with the patient's needs at the centre of all involvement, rings very true to Strøm-Erichsen.

- It's incredibly important to have the patient at the centre of their own life. It is often the case for people with disabilities that they are dependent on many different types of expertise. But things that have been very important to Cathrine, my daughter, were perhaps not so important to the doctors. It has often been difficult to get across what Cathrine felt was most important to her at any given time.

Aging with dignity

Strøm-Erichssen is the new chair of the board of the Dignity Centre, a national, interdisciplinary centre of expertise that combines knowledge about palliation, dementia, emergency medicine, volunteering and culture in elderly care. The Dignity Centre is an independent organisation that works to ensure that vulnerable elderly people in Norway have a dignified old age.

The fact that elderly people with many concurrent diagnoses use many of the resources of the health service, but still receive treatment that can contribute to more health problems and increased illness, is a paradox that the chairman is very concerned about.

- It's very strange that this problem is not more widely discussed. It's incredibly important to give this field and this patient group more attention, she says.

- Dignity Care appears to be an ambitious project, and I can see that they will very quickly encounter privacy barriers. As Minister of Health, I saw how demanding it is to introduce new things. It takes a long time to succeed in order to put in place solutions that are good enough. I'm not saying that they can't be solved, but when the information goes to different service levels, it becomes even more difficult. Nevertheless, we need to solve the challenges in the health service better than we do today. If we don't manage to expand the collaboration arenas physically - with interdisciplinary personnel - and digitally with systems that support their work, we won't be able to have as good a healthcare service in the future as we have today.

I hope Dignity Care works so that we can take several small steps at a time, before the big perfect one is in place, and thus enable the patient to be the boss of their own body, says Strøm-Erichsen.