Empowering Danish citizens

This is another blog post in our series Reflections Careum Congress 2014 and related to Careum’s interest in co-creating health. Nicolaj Holm Faber, Danish health care expert and Stanford T-Trainer shares his thoughts on rolling out a self-care intervention in Denmark. He provides insights on how self-management support has been embedded in the Danish health care system and how it has to be tailored to address the needs of specific groups. Are expert patients the answer?

Self-management support in a nutshell

Self-management support is essential for innovative and patient-centred chronic illness care. In the variety of self-management programs, Stanford’s Chronic Disease Self-Management Program (CDSMP) stands out with a huge evidence base and has been disseminated globally. Denmark is one of the European countries with vast experience with the CDSMP and has developed additional programs to support people with chronic conditions and their significant others.

The CDSMP is a generic self-management program, which has been developed at Stanford University. It is delivered as a course within six weeks and in sessions that last about 2,5 hours. The course leaders are voluntary patients with great experience in self-management. Focus is the management of every day life with a long term condition. The aim of the program is to increase the self-efficacy of the participants.

Our momentum

In 2006, the Danish infrastructure changed. We went from having around 300 to 98 municipalities. These municipalities had new responsibilities in terms of disease prevention, health promotion, rehabilitation after sickness leave and, in general, supporting people with long-term conditions, such as arthritis, diabetes, different kinds of chronic pain or depression/anxiety.

At the same time, the new municipalities had to finance 20% of hospitals costs related to re-admissions of patients with chronic conditions. This created a financial impetus and motivated the municipalities to helping their citizens in dealing with challenges of long term conditions in order to reduce the readmissions rate. Besides, this can be considered a win-win situation since reduced health care costs would be a result of increased quality of life for those living with chronic conditions.

One of the main challenges was that people have all kinds of different diagnoses. The crucial question was: How to support individuals, a community or even a big municipality with up to 60.000 citizens with a program that include something for everybody.

A generic intervention

At Stanford University, School of medicine, Dr. Kate Lorig experienced similar challenges but from a different angle. Since the 1970ties she had worked on an arthritis self-management program. But when she was asking participants about their challenges with and benefits of the program, they reported back almost anything but challenges and benefits specifically linked to arthritis. This scenario led to the idea that living with long term conditions gives you a wide range of challenges and possible benefits, no matter what specific health care problem an individual is experiencing. And the best place to solve those common problems is in a group with people with similar challenges and experiences.

To cut a long story short: Kate Lorig developed a generic self-management program (the CDSMP), which was introduced in a variety of settings in different countries to various populations. The important thing to understand is that the CDSMP is NOT treatment but a potentially great supplement to treatment enabling individuals to regain control of their own life despite having a long-term conditions. The CDSMP’s main benefits, discovered in numerous research studies, is reduction of physical limitations, experience of a better self-reported health, reduction in symptoms of depression and anxiety and an increase in self-efficacy.

Rolling-out the CDSMP

Back to Denmark. Here, the National board of health and the Danish Arthritis association decided to dessiminate the CDSMP in the municipalities. The hypothesis was that next to the more disease-specific activities happening in the municipalities, a generic program like the CDSMP for all kinds of long term conditions would potentially be beneficial for the citizens.

The Danish Committee for Health Education, a private non-profit organisation closely tied to the National board of health, appeared to be the ideal organisation to host the national ‘office’ for CDSMP. The committee translated the materials for the first version of the CDSMP, which was piloted in 2003-2005. Since 2006, up to seven employees are working on dissemination and quality assurance of the Stanford programs.

What was our strategy? The idea was to approach the municipalities with both a top-to-bottom as well as a bottom-up approach. This means that the committee at one level secures the support at policy level. And we offer support to each municipality in how to run the CDSMP in a local community setting. From 2006-2008, the program was disseminated in 82 out of the 98 municipalities. During that period, all services from the Danish Committee for Health Education were financed by the non-profit foundation TrygFonden.

Targeting chronic pain

All CDSMP participants fill out a questionnaire after course participation. From this data we could see that close to 50% had some kind of chronic pain condition. Therefore, in cooperation with the National Board of Health, the Danish Committee for Health Education decided to disseminate a derived version of the CDSMP, the Chronic Pain Self-Management Program (CPSMP). It was financed as an implementation and effect evaluation project. From 2010-2012, the program was disseminated to 41 municipalities,  a randomized controlled trial was conducted (n=500) and its results are comparable to international studies.

CPSMP started in Denmark at the right strategic moment. The municipalities had little to offer for those citizens who were living with challenges of chronic pain. Today, the Danish CPSMP version is widely disseminated. In many municipalities, the program is also part of local «return to work» strategies since 80% of those Danish citizens who are the farest away from employment have chronic pain.

Mental health – unemployment

Recent findings from the USA suggest that the CDSMP may be an effective resource for people with serious mental illness. In the UK, the CDSMP has been altered into a mental health workshop called «New Beginnings». As the Danish study on the CPSMP had discovered that 24% of its participants had symptoms of anxiety and 40% had symptoms of depression we had a substantial reason for addressing mental health, too. Since 2012, we have translated as well as disseminated the British «New Beginnings» program in 46 Danish municipalities and a randomized controlled trial (RCT) was conducted with 900 study participants.

In Denmark, we see a corelation between unemployment and long term disease. However, the two systems, health and employment, are not used to working together. So, in cooporation with Stanford Patient Education Centre, the Danish Committee has altered the CPSMP in order to focus the workshop on managing health and employment. In this workshop, called «Learn to tackle employment and disease», all activities are linked to the challenges of working, even though disease limits your functionality.

We have planned a RCT (n=1000) to investigate the effect of the workshop as a supplement to existing activities in local job centres. Simultaneously, a new Danish legislation states that if your are on a long-term sick leave (more than 6 weeks) your municipality is obliged to offer you self-management support, e.g. the CDSMP.

Challenges in dissemination

What are the main challenges of disseminating this new program?

  • First of all, the above mentioned lack of co-oporation between the health care system and the (un-)employment system.
  • Secondly, the challenging recruitment of participants for the program. We are doing a lot of information meetings to help the municipalities in building a common platform for delivering workshops. And we are trying to communicate the benefits of the workshops in the municipalities to support the recruitment. We are also approaching all general practitioners so they might encourage people to attend the workshops.

So where is the problem? Recruiting participants via job centers might be an explanation. Maybe unemployed citizens have to deal with two different challenges at a time. They are facing financial insecurity because of their lost job. Concurrently, they have to deal with the uncertainty of their chronic condition. They might not be ready yet to deal with both health and employment at the same time. And maybe the very strict nature of the Danish employment legislations are putting pressure on individuals. They have to prove that they are too sick to work instead of trying to find new ways of employment while living with a long term condition.

Closing thoughts

We now experience the benefits of all the studies, which were done on Stanford self-management programs in the Danish health care system. We have successfully transferred international findings to Denmark. But there is still a lot of work to be done. A key challenge was and still is to make these successful and effective programs more accessible for hard-to-reach groups and those citizens most in need of self-management support.

What are your thoughts and experiences with recruitment for self-management support? How can interventions be successfully implemented in health systems to address the needs of citizens with chronic conditions? How can the gap between different systems (health versus employment sector) be bridged?

Nicolaj Holm Faber

Nicolaj Holm Faber, MA in philosophy and rhetorics, is working at The Danish Committee for Health Education, Copenhagen, as a senior consultant. He is a T-Trainer for Stanford self-management programs and is training health care professionals in patient empowerment. He is involved in the European Network on Patient Empowerment ENOPE and is collaborating with the Careum Foundation on self-managing chronic conditions.

23 thoughts on “Empowering Danish citizens

  • 2015-02-18 at 11:15

    Dear Nicolaj

    Thanks so much for this interesting content. I really enjoyed reading it and I was particularly intrigued by this sentence:

    We now experience the benefits of all the studies, which were done on Stanford self-management programs in the Danish health care system.”

    Would it be possible to provide some URLs to these papers done in the Danish health care system? I for one would love to read some of these surely interesting results.
    I know a few might be in English and others in Danish…. that is fine.

    I am sure readers of this blog will be interested.
    Thanks Nicolaj

    • 2015-02-19 at 12:42

      Dear Urs
      Thank you for your comment and request for URL and link.
      First of all, I will direct you to our website: http://www.patientuddannelse.info/evaluering/andre-undersoegelser.aspx
      All the reports at this linked page is in Danish, some with an English summary. Next to the conclusions and results in the studies, they report a 8 year process of implementing the program in a Danish reality. This is also benificial in terms of the political and financial support needed, when you implement these programs at a national level.
      If you search for: Lotte Nygaard Andersen, PhD: “Here we’re all in the same boat” Scandinavian Journal of Psychology, 2014, 55, 333–342, you will find an English article, comparing CPSMP and tailored physical activity. Both interventions have strengths and weaknesses, but the conclusion is interesting, because it seems that the cpsmp makes sense as an important supplement in terms of returning to work. The participants have an emotional and a functional effect of CPSMP, meaning that they think differently (and more positive) about their health situation and functional level.
      We are still waiting for the publications of our CPSMP RCT and Mental health RCT, so I have no links yet.
      I hope I have provided some interesting reading materials for you to investigate!

      Best wishes

      • 2015-02-19 at 14:08

        Dear Nicolaj,

        thank you for sharing these highly relevant insights into your experiences and evidence on the CDSMP!

        I think it is imperative to facilitate group-based self-management support for people with low health literacy and vulnerable groups. And as your data from the CPSMP trial suggested it was and still is an important next step to make such interventions accessible to unemployed people with chronic conditions.

        You have mentioned the challenges of recruitment, a common problem of interventions in the area of health promotion and disease prevention. And I think you are absolutely right that there is a need to closely collaborate with job centers so these interventions are integrated respectively linked with other programs they offer.

        Similar suggestions have been made by Dutch researchers who have worked on empowering employees with chronic conditions. Varekamp et al. concluded that embedding such interventions into occupational health centers or other out-patient settings could help to reach out, e. g. to less educated individuals.

        But the key questions might still remain unanswered: How to inspire such organisations to collaborate and to invest in making self-management support happen? And how to motivate vulnerable and hard-to-reach groups to participate?

        Looking forward to your thoughts,


        • 2015-02-20 at 09:46

          Hi Joerg
          Thank you for your input. I think the Dutch experience is important to explore.

          When we talk about recruiting hard-to-reach groups we are at the moment exploring two new venues: (1) Drop-in centres for active and former addicts of e.g. alcohol and (2) social housing areas.

          The strategy in the Drop-inn centres is to embed CDSMP in the centre as a natural activity for the users. Two weeks ago we had a workshop with three different Drop-in centres, users and employees. The purpose of the workshop was to adjust title and communication about cdsmp and maybe spot some potential workshop leaders. It was a very positive experience. And after the workshop we had more than ten users that were interested in being trained as workshopleaders, so they can run workshops at their Drop-in center. So next Wednesday will start the training of leaders to this project. In this project the leaders will be one user and one employee.

          In the social housing areas, we see groups of citizens with a high percentage of unemployment and long-term conditions. Again, it makes sense to embed the CDSMP as an internal activity since a lot of social housing areas functions as a small community, with people living their lifes close to each other and with many of the same challenges in everyday life.

          We will share the experiences from these projects in the ENOPE network.

          What is the experiences with hard-to-reach groups in Switzerland?


          • 2015-03-02 at 08:27

            Dear Nicolaj,

            thanks again for comments and the additional information on the topic. As some other comments have already addressed your questions on experiences in Switzerland, let me add some information here that I have found in a blog post from the Nuffield Trust (UK).

            There, Sara Riggare, a patient activist and medical student from Sweden shares her thoughts on self-care. She writes:

            “[…] self-care is so important. I am the only person with the whole picture. To me, self-care is everything I do to stay as healthy as possible with a disease that is a difficult life companion.”

            I also do like her picture summarizing the often quoted amount of time people living with chronic conditions are actually involved with health professionals.

            All the best, Joerg

        • 2015-03-02 at 11:17

          Dear Nicolaj,

          We recruited about 650 secondary mental health service users for our initial self-management interventions using a variety of approaches. We published the development and delivery of the intervention here:


          We have two papers on the findings, I can give you details on these as well. We recruited through voluntary sector organisations (NGOs) and also held public meetings and had information stalls in public places.

          We have developed two variants that are currently underway one with single parents and one with prisoners. We have been reasonably successful at recruiting for both using similar techniques.

          Kind regards,


      • 2015-02-25 at 08:31

        Dear Nicolaj
        Thanks so much for the one link.

        1. I looked at http://www.patientuddannelse.info/evaluering/andre-undersoegelser.aspx

        If I understand the content provided on the website (see link above) correctly (i.e. having looked at several Danish reports), these are descriptions.
        But maybe I am not looking right. As it is I cannot find an evaluation study.

        2. Based on my point 1, the Lotte Nygaard Andersen, PhD: “Here we’re all in the same boat” Scandinavian Journal of Psychology, 2014, 55, 333–342 reference is very important.

        I found the study here:

        Lotte Nygaard Andersen published some very interesting qualitative stuff, chapeau !

        3. You write:
        “We are still waiting for the publications of our CPSMP RCT and Mental health RCT, so I have no links yet.”

        While I understand that it takes time to get things published. Is there not a working or conference paper available showing these data?
        Usually, research papers are presented quite a while beforehand at conferences… can you share these?

        Do you have links to those so one can download this important work?

        Since I have been working more with doctors myself, I am amazed how programs that look good in theory, can fail… in practice.
        For instance, sometimes organizational challenges make it hard for doctors to succeed. Other times, all goes well, until healthcare professionals have to talk to patients and then write reports. I just saw another report shared by a surgeon with other experts yesterday. After checking, it became clear that some of the things the patient said were inaccurately reported… This “engaged” patient was not amused 🙁

        Nicolaj, thanks so much for sharing.
        Was ist Patient Empowerment?

        • 2015-02-27 at 12:41

          Dear Urs
          Thank you for your comment. I regret that we didn’t do English abstract of the reports. Most of the documents are concerning research studies in effect, dissemination and cultural adjustments.
          Regarding the rct trials, we use an independant university so I have no access to preliminary results at the moment.


    • 2015-03-13 at 15:09


      We are convinced that the CDSM approach can play an important part in getting people living with a long term condition into work. It’s been a long journey but we are about to start work with the providers of welfare to work services in the UK. Most of this provision is outsourced to the private sector who, understandably, need a business case to support the investment the development of CDSM approach. Would you have any data that would provide an indication of how many people (%) this approach helps to become economically active?

      Thank you


      • 2015-03-15 at 22:27

        Dear Catherine,
        Thank you participating in the debate. Since I wrote the blog, we have included 270 participants in our back to work CDSMP approach. So we have overcome the trouble of recruiting people to the study. And we have learned important things about communication between sectors, e.g. health and unemployment.
        We will present the data and results of the RCT through the ENOPE network. We can’t expect result before 2017.


  • 2015-02-23 at 14:33

    Hi Nicolaj

    Thank you very much for sharing your valuable insights into the Danish experiences with implementing the CDSMP.

    Reading about the challenges with recruiting participants, I was reminded of Kate Lorig who said upon her visit to our leaders’ meeting: “How to reach specific target groups? Benefit from the peer momentum! To be a peer means more than – in this case – also being chronically ill. But that people share other social and/or cultural characteristics as well. Therefore, first recruit potential peer leaders from that specific group and then ask them how to reach this group. Where are these people, where do they go? Offer the workshop in the place where they meet anyway.”

    Just recently, I came across an interesting point in a newly published literature analysis about the information seeking behaviour of migrants in Switzerland and abroad. In respect to implementing the CDSMP with and for the migrant population in Switzerland, I was glad to see that interpersonal communication along social lines of knowledge exchange is of widely recognised importance:
    «In many cases, it also seems that training a lay health educator (what is called “promotora” in Spanish), who can then deliver face-to-face or peer-to-peer information, is preferred over having to seek out information, even information that might be available in audio/video format. This is almost certainly the preferred way for many people to get their information – through trusted people, rather than from an external source»
    (Paul H. Matthews, cited in Kaya, Bülent (2014): Migration et information sur la santé: revue de littérature. Croix-Rouge suisse: Berne, p.42).

    This could explain – at least in parts – why those CDSMP courses offered primarily for people with a migrant background in Switzerland actually do not experience these recruiting challenges known from numerous accounts elsewhere. Maybe this could be true for people from other hard-to-reach groups? Eventually, I feel encouraged to pursue this way of promoting health and self-management for these people.

    Still, I am very curious of others’ experiences with reaching specific groups from socio-economically disadvantaged backgrounds. What about adapting the course itself, e.g. language issues, hand out material or flipcharts used for moderation?

    Keen to learn more about opening up and reaching out with the CDSMP,

    • 2015-02-27 at 10:04

      Dear Sylvie
      Thank you for your insight and reminder of the full potential of the peer role and role modelling.
      Reading your reply made me think about and research study of CDSMP from Denmark, published at our website http://www.patientuddannelse.info.
      Looking at 54 danish municipalities, they found that the local coordinators of CDSMP with greatest success had:
      – personal experience with long term disease
      – participated in the leaders workshop
      So in other words, they had great insight in the challenging life with longterm disease and could relate to the target group of the workshop.
      If you had that background, you had less problems in recruitment to the workshops and the lowest drop out rate as well. So I think you have a very important point.

      Thank you for the reminder.


  • 2015-02-24 at 20:52

    We are currently working with jobcenters and other organisation who are supporting people with long term health conditions to become work ready. We find many of them have very complex needs and quite significant mental health issues.

    More widely I am very interested in wider engagement, we find the idea of self-management and managing your health condition is not something that the public easily understands – interested in your experiences of engaging people onto your programmes.


  • 2015-03-02 at 17:27

    Dear Nicolaj,

    Thank you for your work and the deep thought going into your efforts. On the north coast of California, our quest to find ways to connect with those most in need of these programs is also challenging and in some ways is caught up in the changing nature of healthcare delivery in this country. These comments reflect only personal thoughts I’ve held for some time.

    The most basic way change happens is by the growth and maturation of the younger generation. The closest and most constant connection people have is to family. The basic skills taught in the CDSMP are truly life skills; action planning, problem solving, decision making could and should be taught in schools.

    If the children and grandchildren of those suffering from chronic conditions have and can share these skills with family members needing them, functionality would greatly improve, and the coming generation would be much better prepared to make the difficult decisions they face.

    A venue would be created for getting the word out about programs aimed for adults – children could bring home information about programs for adults linked to what they are learning in school. The concept that “it takes a village” to raise a child can move in both directions – our children could help our elders.

    • 2015-03-04 at 22:21

      Dear Lynn,
      Thank you for a very nice comment and reflection.

      Through all the years working in this field, we have discussed how to approach younger participants for CDSMP. Looking at UK experiences, we have been thinking about the following possible approaches:
      – Family workshops with a group of 3-5 families.
      – online communities
      – self-management programs within public school system.

      At the moment we are exploring the last possibility since there is a good argument in applying self-management support to the group of students as we know – statistically – that there is a risk to drop out of a youth education. But reading your comment made me think, that maybe we should aim even lower!! In age that is!

      All the best,

  • 2015-03-03 at 14:21

    Hi Nicolaj

    Here on the Eastern Shore of Maryland, U.S., we are having success in partnering with cancer programs/hospital systems to offer Stanford’s newest self-management program ‘Cancer Thriving and Surviving’ to their cancer survivorship programs. As of January 2015, formal survivorship services are required of all cancer programs. Cancer Thriving and Surviving meets many of the required standards.

    This program results in an intense level of sharing for both cancer survivors and caregivers, especially around fear of recurrence. We have also found that participants are much more likely to participate in other wellness services and programs as a result of being in this workshop.

    Sue Lachenmayr

    • 2015-03-04 at 22:28

      Dear Sue
      Thank you for your comment.
      We are actually looking at the online cancer program as a possible next step. We have made a good contact in with the Danish Cancer Association and we are right know searching for funding of a national dessimination in Denmark.

      I like the fact that participants tend to do more workshops after participating in the workshop. I think that the ‘word of mouth’-aproach is something that we should focus more on when we try to reach ‘hard to reach’ groups.

      All the best

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  • 2015-12-07 at 08:57

    Dear Nicolaj,
    Thank you for sharing your experiences with implementing the CDSMP in different health settings and patient groups. For me, as a Dane living abroad, I find it very inspiring to hear about your work and experiences in this field.

    I am working in the field of self-management research myself. I came to wonder whether integrating some of the elements from the CDSMP into electronic health (eHealth) interventions would be fruitful. And furthermore if it would be accepted by the citizens to the same high degree, as it seems CDSMP has been across different patient groups.

    eHealth has the potential to reach out to large numbers at a relative low cost. Aiming to help people cope with daily health related consequences, the use of a generic electronic program would be in line with your initial idea of rolling out the CDSMP.
    The full potential of integrating elements from CDSMP into electronic solutions is not yet clear to me. Besides having the potential challenges related to acceptance and use of electronic interventions in mind. I see a huge prospective by during so. Personally, I think it would be interesting to hear the ideas and perspectives on that from others.

    I agree with you that the changes in the Danish infrastructure in 2006 seem to have given the right momentum for the roll out of CDSMP. However, what still remains unclear to me is whether patients themselves are prepared to rethink mode of delivery for such health strategies. Did you make any studies exploring patients’ preferences in mode of delivery for self-management programs?

    I would appreciate hearing perspectives or experiences from other on integrating self-management elements into eHealth interventions.
    I am really looking forward to reading the results from your studies under conduction Nicolaj.

    Best regards, Mette

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  • 2016-01-04 at 14:12

    Dear Nicolaj,

    I didn’t see any comments mentioning an important resource for self-management programs that should be considered. I would like to suggest that all interested parties look to engage with Patient Organizations (POs) to explain about any planned or current CDSMP programs. These POs could possibly spread the word for recruitment and provide communication to their members about offered programs. Some POs have conducted patient-driven research or surveys of their members interests, research priorities, and preferences. While POs can be very protective of their members’ privacy (rightly so!), they can be strong allies if you can partner with them on their terms.

    Karin Holm
    Patient Advocates for Cancer Research & Treatment (Assoc. PACRT)
    Geneva, Switzerland


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