Empowerment-Evidence: Stanford model in Europe

This blog is on evidence from the first systematic implementation and evaluation of a Stanford self-management program in Switzerland and German-speaking countries.
The findings are available open access @ BMC Health Services Research including the questionnaires and interview guides as additional material. ==> download full article (PDF, 892 kB)

Evidence-based support in chronic illness

Supporting self-management can have positive effects on individuals’ motivation, knowledge and skills. It can also improve quality of life, clinical outcomes and an efficient use of health care resources. Stanford’s Chronic Disease Self-Management Program (CDSMP) stands out as an intervention with a substantial evidence base. It has been broadly disseminated across populations in various countries. For instance, see the Danish experiences reported in this blog.

The CDSMP includes structured small-group interventions (2.5 h each) over six weeks. These peer-led workshops address people with a wide range of diseases, those with multiple morbidities and their significant others. The content is on aspects encountered throughout the chronic illness trajectory (i.e. fatigue, medication/symptom management, decision-making, communication with providers, and behavioral changes related to nutrition and exercise). In addition, skills training is imperative in the workshops (e.g. action planning or problem-solving)

So far, the CDSMP has not been used in German- and French-speaking central European countries. Between 2010-14, several organizations along with the Careum Foundation have conducted a systematic adaptation and implementation of the CDSMP as «Living healthy and actively» (Evivo). ==> Find out more

«Valuable contribution to comprehensive chronic care and public health strategies»
Studies have demonstrated the CDSMP's effectiveness across age groups and cultural respectively ethnic backgrounds. Most positive outcomes are among a middle-aged population. Improvements observed in health behaviors (e.g. increased exercise), enhanced cognitive symptom management or communication with healthcare providers ==> e.g. Brady et al. (2013), Kennedy et al. (2007) or Quiñones et al. (2012)

Study findings on systematic adaptation

The adaptation and implementation was evaluated. Key questions:

(1) to determine if the CDSMP could be effective in Austria, Germany and Switzerland;

(2) to explore its acceptability and utility in German- and French-speaking European countries as a useful supplement to chronic care strategies. Multiple methods were used to explore the perspective of participants with a longitudinal quantitative survey and qualitative focus groups/interviews.

For the CDSMP in Switzerland respectively German- and French-speaking European countries, our study findings suggest (==> download full article, PDF, 892 kB):

  • the process for cross-border adaptation was effective
  • this ready-for-use version of the program can successfully be implemented in diverse healthcare and community settings
  • participants accepted the program and considered its content and methods very useful
  • short-but also long-term benefits were reported by attendees
  • self-efficacy improved during the workshops with a slight decline in benefits after several months
  • it can be considered an asset for supporting self-management in chronic illness care
  • it could have meaningful, wide-ranging implications for primary prevention and potentially tertiary prevention of chronic disease

 

«You simply try something to find out whether it works for you or not. Where can you start to get something apparently impossible done? And then to experience this Eureka moment, the self-efficacy…» A course participant

 

Promoting empowerment – «Evivo Network»

Organizations running the adapted Stanford program «Living healthy and actively» are embedded in the non-profit association «Evivo Network». It was founded in 2014 to promote patient empowerment and the sustainable future implementation of the Stanford model in Switzerland and German-speaking Europe.

Since 2015, workshops are also delivered in Germany by the multi-stakeholder consortium INSEA, an «Initiative for Self-Management/Self-help, Empowerment and Active Living». It is a member of the Evivo Network and currently consists of a regional self-help organization (Selbsthilfe Koordination Bayern, Germany) and the first mini-med school in Germany (Patient University, Hannover), which are delivering the workshops and are supported by two non-profit foundations (Robert Bosch Foundation, Germany; Careum Foundation, Switzerland) and a health insurance fund (Barmer GEK, Germany). In 2016, courses will also be delivered at the Gesundes Kinzigtal, a regional integrated care system.

Find out more in this video clip on Evivo (in French):

YouTube Preview Image

Towards «peer-to-peer healthcare»

Our study findings are promising. However, the evaluation was, amongst others, conducted without a comparison group and lacked randomization, thus, the findings must be interpreted with care.

Overall, peer-led self-management support still remains in its infancy in Austria, Germany and Switzerland. Yet, as health policy awareness increases regarding the need to empower patients and foster health literacy, the role of peers in patient education and self-management support is growing. Here, the Stanford program can be considered a valuable supplement and additional tool for supporting self-management in chronic illness care. The program should be reasonably integrated and linked into existing health and social care services, so it can yield its benefits as a valuable supplement instead of being used as a stand-alone solution.

Further investigations are needed to tailor the adapted CDSMP for better access to vulnerable and disadvantaged groups who might benefit the most, in terms of facilitating their health literacy in chronic illness. There is also a need to further investigate the cost effectiveness of the program, its social impact and returns on investment.


Your feedback and thoughts!?

What other steps should be considered to ensure a rigorous cross-border adaption of complex self-management interventions?

 Which populations should be addressed in particular in order to tailor the adapted CDSMP for those who might benefit the most?

 What are your thoughts on the Stanford model as an asset for secondary or even tertiary prevention of chronic disease(s)? 

Joerg Haslbeck

Dr. Jörg Haslbeck, MSc, Pflege- und Gesundheitswissenschaftler, ist für Careum Forschung tätig und Postdoc am Institut für Pflegewissenschaft, Universität Basel. Sein Interesse: Empowerment, Selbstmanagementförderung bei chronischer Krankheit und Gesundheitskompetenz.

13 thoughts on “Empowerment-Evidence: Stanford model in Europe

  • 2016-01-04 at 10:46
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    Dear Jörg
    Very nice article and great findings.
    It is great to see, that you have similar findings in Switzerland etc. compared to our findings.

    New findings in Denmark
    In Denmark we just got the result of our RCT trial (n=924) on our CDSMP adaption to mental health workshop. And the interesting thing is, that next to very nice findings on a general level, the researchers did some sub group analysis and found the following interesting knowledge.
    It seems that people with very heavy symptoms on anxiety and/or depression increases their self-efficacy significantly. But some sub groups with medium symptoms seems to – next to the increase in self-efficacy – reduce symptoms of anxiety/depression at a level that matches treatment with medication/theraphy.

    So to give you a qualified answer to one of your questions about who will benefit the most, I have the following reflection: CDSMP is for everyone with a long term condition. But people with severe health problems (mentally or psysical) might need a supplement to CDSMP, e.g. of theraphy or treatment, to increase their benefit of the workshop. And people with medium symptoms will benefit regardless of supplementary initiatives.

    But the question remains: How to communicate the benefit to citizens and health care professionals to recruit the right participants?
    The study will be published in 2016 and I will share the article with you via this blog and via http://www.enope.eu.

    CDSMP as a silo breaker
    In Denmark, the stanford model (CDSMP) has developed into a tool for initiating cooperation between uneven partners. Since it is a generic intervention, it is possible to motivate institutions that are not used to cooperating, to coopereate about implementing CDSMP for their clients. In Denmark this has been the case for the following projects: Cooperation between employment and health, municipalities and drop inn centres and in areas of social housing. All examples are about areas that did not work together but decided to implement CDMSP. And all participants in this project have decided to continue running workshops.

    Next steps in Denmark
    At the moment we are working with the municipality of Copenhagen to create a care givers workshop. The care givers are welcome on the existing workshops but it seems that the benefit from being in a group uniquely for care givers. And research in Denmark shows that care givers of people with long term conditions, is at high risk to develope mental illness themselves.

    We are testing CDSMP as a intervention for people suffering from stressrelated healthcare problems together with DJØF (union). The rate of stress symptoms are quite high amongst people with a university degree and this creates a great argument for implementing Self-Management tools.

    Reply
    • 2016-01-05 at 06:33
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      Dear Nicolaj,

      thanks for your valuable feedback and the update on «Empowering Danish Citizens» – looks like you have a lot of things going on. Great!

      You are writing on the Danish trial findings: «…people with very heavy symptoms on anxiety and/or depression increases their self-efficacy significantly.»

      This is really encouraging. You might have noticed that one out of five persons (21 % from n = 278) in our study were people attending the workshop with a mental health problem. Even though at that time point the program had no direct link to mental health services. Now, Evivo (CDSMP) is running in the canton Aargau, amongst others, linked to out-patient care of a psychiatric hospital. It will be interesting to find out how, if at all, this affects the numbers of participants with mental health problems.

      In general, integrating/linking the program to existing services appears to be the key here in Switzerland and German-speaking countries. Similar to what you have described about your experiences in breaking up silos. Makes me wonder: Would be useful to compare the different ways/modes of European implementation of the program one day… What do you think, we could do an article about that. Interested?

      And yes, recruitment is an issue. This is why we are currently working on another approach in making the program better accessible for people with low health literacy and vulnerable groups. Got a small grant from the Suisse Federal Office of Public Health to do that. Pilot/feasiblity study. Will let you know about the findings and there is a blog post coming up on that topic so stay tuned.

      I was wondering: What is the concept and process for the care giver workshop? Any public and patient engagement? How is that workshop different to the generic program? What topics/special needs of informal caregivers have to be addressed in particular to reach-out to this group?

      I am asking these questions as informal caregiving is a huge research topic over here in Switzerland, too, and has received health-policy attention.

      All the best, Joerg

      Reply
  • 2016-01-04 at 13:45
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    Dear Joerg & Colleagues,
    Having used self-management techniques myself to recover from and move forward after early stage breast cancer diagnosis and treatment, I only wish this type of group program had been available to me at the time in Geneva, Switzerland.

    The idea of peer-to-peer healthcare support in addition to the support of the physician/medical community is extremely appealing to me, and I think, could be so to many people in today’s society. We know that physicians cannot be omnipotent about all things and that patients in specific disease areas sometimes have the most useful information to share together. We patients wish that researchers and clinicians would listen more to our personal priorities for clinical studies and improving prevention, diagnosis, and treatment options.

    I think that group support using a well-documented and high quality program like the Stanford CDSMP, adapted to local cultures and languages, with fellow patients as role models and peers, will be an empowering and efficient intervention that many patients will choose as well worthwhile. I hope their healthcare professionals and medical insurance companies will also appreciate the value of such programs.

    Research like yours from Austria, Germany, and both German-speaking and French-speaking populations in Switzerland – as well as Nicolaj Holm Faber’s testing in Denmark – will help build awareness about the benefits of empowering patients in this way. I hope this work can be replicated widely as I think it will be particularly cost-effective and helpful to patients in resource-limited countries or segments of society.

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

    Reply
    • 2016-01-05 at 06:47
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      Dear Karin,

      thanks for your extensive feedback and the encouraging thoughts on the program. It is empowering for us researchers/health professionals to learn about the usefulness of the Evivo program for those living with chronic conditions.

      I have heard similar experiences from a breast cancer survivor in 2012 when a first CDSMP leaders’ training was held. A woman shared exactly the same thoughts. That Evivo (the CDSMP) would have been very useful to her if she had received such peer-led self-management support earlier in her chronic illness trajectory. IMHO insights like yours in experiencing chronic illness and supporting initiatives like Evivo will really make a difference.

      It is about raising awareness – and I could not agree more: engaging patients in research and co-creating healthcare services is imperative!

      From your perspective as a patient advocate: What are the most important things to consider when adapting programs like the CDSMP culturally or to specific conditions?

      All the best, Joerg

      Reply
  • 2016-01-04 at 18:10
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    It is very exciting to see this paper and the very methodical ways that adaption for both languages and cultures were carried out. I think that that this will act as a guide for others wishing to do similar work. I have so enjoyed watching our colleagues in Switzerland progress with this work. They have done so in slow careful manner, which is sometimes not possible. All of their hard work has paid off with continuing expansion of the program. It is my hope that we can soon reach many more people in German and French Speaking Countries. Many many thanks. Kate Lorig

    Reply
    • 2016-01-05 at 07:00
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      Dear Kate,

      thank you very much for your appreciative thoughts on the Suisse adaptation and implementation process!

      Indeed it took some time. Yet, as far as I am concerned, in contrast to previous cultural adaptations and implementation approaches of the CDSMP the process was not predominantly research-driven (meaning adaptation/implementation as part of a RCT). The timeframe allowed an open innovation process, which helped to actively engage patients and introduce the program to a variety of settings.

      All this, of course, was possible to the vast evidence-base on the CDSMP that has been laid out by you, your team and other colleagues from various countries. These findings were the stepping stones for Evivo that fueled the Suisse learning-process/experience.

      Thanks for your support!

      Joerg

      Reply
  • 2016-01-05 at 09:11
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    Dear Joerg,

    I’m so happy for the fantastic work you are doing for CDSMP.

    From every day life I know that the program works very well.
    I’m working with elderly immigrants and home care. They don’t know Swedish so I think the employees are the leaders to be 🙂 I do like to contribute if you think it’s a good idea.

    Reply
    • 2016-01-05 at 16:21
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      Dear Birgitta, thanks for your comment!

      Your support is highly appreciated and we are looking forward to getting in touch with you on how to better support ethnic minorities and those with low health literacy. We will provide a blog post soon about the approach. Thinking about it we might have to add one in English, too 🙂

      Part of our project is addressing and involving international experts on supporting self-management of vulnerable populations. And thanks to ENOPE you were already added to the list.

      Looking forward to your input!

      Joerg

      Reply
  • 2016-01-10 at 08:55
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    Dear Joerg,
    Thanks for sharing this.
    I really enjoyed reading your paper in BMC Health Services Research. In addition to the adaptation and implementation process and the encouraging results, I particularly liked the comment that some workshop groups continued to meet each other even after the program finished. I think that shows very well how valuable these types of programs can be for the participants.
    I am looking forward to hearing about your new projects.
    All the best,
    Andrea

    Reply
    • 2016-01-10 at 11:19
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      Dear Andrea,

      thanks for your encouraging reply! Very helpful to read about your feedback.

      You have written: «I particularly liked the comment that some workshop groups continued to meet each other even after the program finished.»

      Indeed, this is IMHO a very promising observation that has also been made in other countries. Kate Lorig, the developer of the CDSMP, has mentioned this various times. One of the reasons might be that people experience a different approach of self-care support and self help, in particular one, which is not ‘burdened’ by individual illness biographies but systematically includes helpful illness experiences to problem-solve difficult situations in everyday life with chronic diseases.

      Btw, what other types of self-management support do you consider important?

      All the best, Joerg

      Reply
  • 2016-01-21 at 07:45
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    Good afternoon Joerg,

    You wrote: ‘The lack of workshop participants in Germany was unanticipated and may have resulted from the lack of a coordinated roll-out plan’

    This sentence just stood out for me as it reflects my experience back in 2002 when I was tasked along with Jim Phillips in rolling out the Expert Patients Programme across England. Little did we realise that the National Health Service NHS would have difficulty in getting 16 patients in a room for our newly recruited and trained CDSMC trainers to deliver a six week course to even though the Department of Health had planned and supported the then 303 Primary Care Trusts to do just that! Overnight we had to switch the focus of the trainers work to recruitment first.

    It was a steep learning curve in that first year!

    Thank you for sending me this report it is so good to be aware of all the work involving CDSMC going on in parts of Europe. Particularly at a time when here in England many areas are currently not delivering CDSMC due to the massive NHS re-organisation and cut backs of recent times.

    Best wishes

    Jean

    Talking Health Network, United Kingdom

    Reply
    • 2016-04-01 at 14:07
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      Dear Jean,

      thanks so much for your valuable comment!

      You have mentioned difficulties in the UK and a steep learning curve. This has reminded me of the time when I started reading about the UK developments on self-management support in chronic illness during my PhD training. I immediately came across all the publications around the Expert Patient Programme and, of course, the implementation guide you have written along with Jane Cooper:

      Cooper, J. & Thompson, J., 2005. Stepping stones to success. An implementation, training and support framework for lay led self-management programs Department of Health & National Health System (NHS), eds., London.

      Impressive, that it took you only up to three years to fuel all your experiences from the early days of the EPP into a document that helps organizations in using an empowerment approach like the CDSMP. Must be surprising though that a all over the globe people and organizations seem to go through the same process and have to «re-live» experiences before something gets accepted…

      And more important would be to learn from such experiences in order to avoid cut backs and pool resources for cross-border collaboration in patient empowerment and self-management support.

      All the best from Switzerland, Joerg

      P.S. I actually don’t know where to find a publicly available PDF version of your implementation guide. I am just glad I had saved a version in my reference software 🙂

      Reply
  • 2016-03-31 at 15:23
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    Thank you for sharing the research article, interesting reading. The outcomes seem similar to those achieved when the chronic disease self-management program was introduced across England. Especially the improvement in: self-confidence and efficacy, motivation, changes in positive health behaviours – healthy eating exercise, positive thinking and communication. From the introduction in England we know that participants use their pharmacist more, have less unplanned hospital admissions, have greater knowledge about their condition, feel more confident and motivated to ask questions as part of shared decision making for example, as they become active self-managers. I hope your programmes go from strength to strength as self-management knowledge is a fantastic gift.

    With regards to 6 month follow up, it is interesting to consider the behaviour change and my own ‘self-reported changes’ serve as an example: My self-management is governed by ‘how I feel each day’, and this is noted in my plan. So today I feel….This is also monitored on a weekly and monthly basis as this informs if my condition is heading for a set- back.

    The work of Dr. Judith Hibbard’s, Patient Activation Measure is especially interesting and I think I am definitely at the ‘staying on board’ stage, just, but it has taken me a long time to get to this point, or perhaps it is more about having the confidence in myself to recognise I am at this point.

    About 12 years ago I was very confident in my own self-management, but upon reflection I would say I was only just ‘finding my way’. I realised that actually, I wasn’t really looking after myself through self-management, but simply being determined to not let my condition get in the way. After attending the Expert Patients Programme, (and whilst I know I am far more than my condition), I respect my condition and consider it in all the choices I make. I have a changed perspective, motivation, confidence, and outlook. This is also similar to the experience of other active self-managers I have spoken with.

    So maybe the questions asked after the 6 month stage need to be framed differently to take into account how self-management skills are being used or maintained.

    Reply

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