The project "Optimized Organization for Organ Donation in Stockholm" is one of the 23 projects that have received strategic grants from the Stockholm County Council. The project has initiated a number of studies including an evaluation of the present organization; among other things by arranging a workshop series and by a benchmarking towards four foreign organizations. Pending is now the elaboration of a suggestion as to how a new future organization should be structured and implemented to provide a better basis for the donation efforts, and to gain approval for this from politicians as well as the people working within the current organization.

Furthermore we have conducted a focus groups investigation to investigate attitudes of the public towards the handling of organ donation after death by the health care. The DOSS (Donation Specialized Nurse) function in the Stockholm County has been evaluated and results have been published in an international journal. In order to increase the knowledge and awareness of DCD (Donation after Circulatorey Death) among the medical profession and authorities a state of the art meeting was arranged in 2013. In case of a future political decision to implement DCD in Sweden this project aims to collaborate with VOG in their work on DCD.

Project organization:

Annika Tibell: Medical Director, Program office New Karolinska, project owner

Pia Fernberg: Specialist in anesthesia and intensive care, partial project leader

Linda Gyllström Krekula: Welfare officer, doctoral student, partial project leader

Öystein Jynge: Transplant coordinator, expert in the field

Francis Delmonico: Professor, transplant surgeon, international expert and advisor

Jonas Wadström: Transplantation surgeon, advisor

Ulla Forinder: Social worker, advisor qualitative reasearch Focus group investigation   

Marie Larsson: Administrative support

Progress report   

Strategic Investments - Stockholm County Council

Optimizing the organization for organ donation 2012-2115

Workshop 06-14-12

In June 2012 a workshop was conducted. All heads of activity for ICU wards as well as emergency rooms were invited. The Director of health and health care Catarina Andersson Forsman was the convener. The exceptionally low donation rates up until May 2012 for the Stockholm County where accounted for. The figures where low in particular in comparison with other regions in Sweden. Subsequently, the Swedish Association of Local Authorities and Regions presented a plan to promote organ donation. This workshop has become an annual event and will be important in the process of improving the organization for organ donation in the Stockholm County.


6th International Conference on Organ Donation after Circulatory Death

07-02-13 to 09-02-13

As of yet Sweden does not have DCD – Donation after Circulatory Death. However, the national inquiry appointed by the government is looking into the issue. Thus, there might be a political decision to implement DCD in Sweden in the future. Within the scope of the strategic investment project we want to increase the knowledge about DCD among health care staff. Therefore we attended the 6th international conference on organ donation after circulatory death to get the latest updates from other countries with long term experience of DCD.

State of the art meeting on DCD 11-12-13 to 12-12-13

This meeting with close to 100 attendants representing the medical profession and authorities was organized with the objective to increase the knowledge about DCD and as an initial step prepare all parties involved for a possible future implementation of DCD in Sweden. Several prominent experts within the field from the USA, Spain and Great Britain gave lectures, and a panel discussion was held in order to discuss central questions at issue.

Benchmarking December 2012 until November 2014

In order to get some apprehension as to what we can improve in the current organization for organ donation in the Stockholm region, and how to do this in practice, a benchmarking was made to four against four countries of interest. The countries chosen as benchmarking objects where

• Spain: a country with a well structured organization for donation, research and education, resulting in stable high donation rates

• Norway: a nation similar to Sweden with regard to culture, life style, health care organization; but has significantly higher donation frequency compared to Sweden. Norway is close to being self sufficient in organs.

• Great Britain: a country that commencing in 2009 went through a comprehensive re organization, resulting in a better donation activity.

• USA: focusing on two successful Procurement Organizations, with substantial experience from donation activities and education.

Our work resulted in the following recommendations:

• National organization

• Enhanced central organization in the Stockholm county

• Rules, regulations and directives from politicians

• Specialized staff at the hospitals

• Increased knowledge and change of attitude of the health care staff

• Multidiciplinary collaboration

• Effective system for follow up, reporting, quality assurance and research

• DCD – increased donation potential


The written report was concluded during the fall of 2014. A copy has been placed into the hands of  the National Inquiry as basic data.

Workshop series May 2014 until June 2014

Before a work of change and a re-organization can be initiated it is of great importance to get an idea of how inclined to changes the various players/units of the current organization are and how they view certain issues. For this reason we organized six workshops in collaboration with one of the national leading communication agencies “Gullers Grupp”.

The following players/units from the organization where invited to separate workshops:

• Central Donation Committe (CDK), Stockholm County Council

• Donation responsible physicians and nurses in the Stockholm county

• The Board of Ethics, OFO Mellansverige

• Donations specialized nurses (DOSS) and OFO:s Transplant coordinators

• Representatives for the recipients (Hepathology, Transplantation)

• Karolinska University Hospital Donation council

The setup for the workshops was for the groups to indentify the current situation in the organization, how they would want it to be and how to get there. In practice the participants worked together in small groups and then discussed their thoughts in the entire forum. This way we could get a clear picture of what works well and not so well in the current organization; what they wish the organization looked like and indentified obstacles on the way to reach the goal.

Gullers Grupp have written a report, which also has been handed in to the National inquiry to be used as basic data.

Below are the conclusions from the report:

• Better internal coordination within Stockholm County Council – shattered and dependent on individuals

• Uniformity regarding organ donation within the county council – different policies, leads to unequal care

• Formation of a national organization

• Additional ways to make your will known for the public – making the issue visible, and provide easily accessible ways of making ones will known

• Clear line structure for the work with organ donation –  responsibilities for involved parties should be clarified, with mandatory and rapid reporting

Focus group investigation, carried out during 2013

In collaboration with Ipsos Public affairs Sweden eight focus group interviews were carried out.

The question formulation for the investigation was: What attitudes exist within the Swedish population regarding the handling of care connected to organ donation after death?

From the interviews it appeared that the most difficult/hardest thing about donation after death is the actual death. The trust for the health care in general also strongly influences how individuals reason regarding donation after death. The report was completed during 2014.

Evaluation of the DOSS –function (Donation Specialized Nurse)

This part of the strategic investments project has evaluated how ICU personnel experience the work with organ donation in the Stockholm County, connected to the DOSS function unique to Stockholm County. The evaluation was finished during 2013 and has been presented to the Central Donation Committee of the County Council. Moreover, the results have been published in a scientific paper, published in Clin.Transplant ;Volume 29, Issue 3, pages 185–196, March 2015. The results show that the DOSS function has a significant positive effect on donation rates. Furthermore, the ICU personnel within the Stockholm County perceive the DOSS participation during the donation process to strongly contribute to a better and safer work situation for the staff, together with an improved information to donor families.

Models for a ”pilot” new organization for Stockholm County

Given the results and the recommendations from the benchmarking report and the series of workshops,  we developed five potential levels of re-organization, ranging from mainly more time and resources given to the donation responsible physicians and nurses to extensive re-organizations introducing a national organization and organizations similar to an OPO. This work was presented to the Central Donation Committee. The committee has suggested that the models should be presented at the upcoming workshop for the county council in August 2015 in order to get input and thoughts. Moreover, a focus report will be written and given to the local politicians. In the end it is a political decision as to what level of re-organization should be implemented and what costs are acceptable.

Follow-up and Feedback workshop May 22nd 2015

This workshop had two aims:

• Firstly, to give feedback to the players/units that participated in the workshop series in 2014.

• Secondly, as a next step introduce the participants to the five potential levels of re-organization mentioned above, and get their input and thoughts around them.

Similarly to the workshop series, this workshop was a joint venture together with Gullers Grupp. All groups that participated in the workshop series were invited. This time we gathered all groups at the same time, as opposed to the separate events, one per group, in 2014.

Initially, the attendants were given a brief feedback of the results and recommendations from the workshop series and the benchmarking study. Subsequently the five levels of potential re-organization were introduced. This was followed by group work. Groups were mixed in order to have dynamic discussions and different views and backgrounds in all groups. One organization model was assigned to each group.

The assignment in the first exercise the participants were told to discuss on the basis of the following questions:

* What advantages can you see with the organizational model you have been assigned?

* What drawbacks does the model have?

* Do you agree with the expected outcomes?

* Is there anything you would like to add?

* Is there anything that should be removed?


In the second exercise one person in each group stayed at each table, whereas the other participants moved to another table with another organizational model that they chose. The newly added to the group gave additional thoughts to what have already been said at this table. This gave the attendants the possibility to give their view on the model they were most interested in influencing.

The workshop is currently being summarized in a report by Gullers grupp.

The main conclusions drawn are as follows:


The participants showed a great commitment and a clear need of being involved and influence the process. All different perspectives and fields of knowledge possessed by the attendants are important and can affect the future work with the organizational models. Thus, this commitment should be used, for instance by regular meetings with one or several reference groups consisting of participants from the workshop.


Several of the groups argued that a strong centralization will lead to a significant gap to reality. At the same time the attitudes were positive in terms of gathering various functions of the organization, working at the same location. This would also create a clearer and single “way in” to the organization. This tension between a wish for centralization and at the same time keeping an organization close to reality should therefore be a priority area in the ongoing work.


The participants put forward advantages as well as disadvantages with all organizational models, but directed forceful criticism at organizational level 3. The level was described as a compromise. The attendants questioned if the expected outcome was realistic. This organizational model we perceive as the one the farthest away from the participants aspiration for change.


Regionalt Donationscentrum

Norrbacka S3:01 RDC

Karolinska Universitetssjukhuset


171 76 Stockholm


Regionalt Donationscentrum

Norrbacka S3:01 RDC

Karolinska Universitetssjukhuset


171 76 Stockholm

Telefon till växel

08-585 800 00


08-711 52 02

Gemensam E-post 2015