Partner your Way to Patient-Centric Impact
How the DAWN2 study invested in stakeholders to unleash cascading benefits for people with diabetes.
In 2001, leadership at Novo Nordisk, the global leader in diabetes care, noticed something troubling; a large proportion of people with diabetes were not in control of their condition.
Within diabetes care, control is tracked by the A1C test, which measures the percentage of glycated hemoglobin as an indicator for high blood glucose. Patients on therapy are considered in good glycemic control if their percentage of glycated hemoglobin reads at less than 7%; shockingly, over 50% of patients were failing this threshold.
With highly effective medical therapies being available, the data suggested people with diabetes weren’t getting enough support alongside care. So Novo Nordisk convened a group of the main players in diabetes care and launched a global survey, the Diabetes Attitudes, Wishes and Needs (DAWNTM) study to find out why. As the first large-scale patient survey to uncover the psychosocial factors that get in the way of treatment, it was a groundbreaking moment for pharma. The results showed the difficulties people with diabetes felt with emotional and psychological stress, and the challenges of expressing this to those around them and their providers.
2011 marked the 10th anniversary of this study, prompting a retrospective look at progress so far. Yet although the survey results had been disseminated widely throughout the diabetes community, progress was evident only in select regions and countries, and little had changed in the number of people with diabetes achieving adequate treatment outcomes.With the dramatic rise in the number of people getting type 2 diabetes and healthcare systems failing to support people in getting their condition in control, a crisis was certainly looming.
To their credit, leadership decided to double down and launch a second study, DAWN2TM, with a bolder mandate and vision. Søren Eik Skovlund, currently Global Senior Manager within Global Access at Novo Nordisk (and finalist in the Barcelona Lifetime Achievement Awards), who took leadership on this project, spoke with us to share how they grew the study.
Soren cited two ways they evolved their approach. Firstly, the team set out to stay patient-centric at every stage, even involving people with diabetes in the study-design. They also started with a clearer strategy to convert knowledge to impact; each actor needed to make change happen was involved from day one. Soren stated, “We didn’t finalize the scope and purpose without involving the perspective of all the representatives and all the stakeholders from all the countries.”
Soren’s team managed to work with the International Diabetes Federation (IDF), the International Alliance of Patient Organizations (IAPO) and the Steno Diabetes Center to reach 15,000 people from across 17 countries over a two-year study. These participants, from primary care physicians to people with diabetes, family members, decision-makers, nursing units, academics and dieticians, were also directly involved in setting the agenda for discussion. Their participatory process started by collecting suggestions from all stakeholders. Once these were in, working groups with representation of the many different perspectives on diabetes condensed suggestions through a decision process governed by group consensus. Finally, these summaries were formalized into a stringent scientific framework with the help of subject-matter experts from academia to determine the final research protocol.
Three stages of participatory design
Opinions collected from people with diabetes, family members, primary care physicians, specialist physicians, nurses, specialist nurses, dieticians, researchers, and decision makers.
Working groups created from different stakeholders meet to condense and prioritize the collected options. No information is removed without consensus.
3. Final research protocol
Summaries from working groups were weighted and combined into the final research agenda. Subject matter experts were involved to refine individual questions and design the structure of the survey in alignment with formal frameworks such as the IAPO Declaration on Patient Centered Health Care and WHOs Innovative Model for Chronic Care.
One extremely interesting suggestion that came out of the participatory process was to change the format of questioning to also capture the positive aspect of living with the condition. While it seems like a simple idea, it was actually quite innovative. The trend has been to couch language in negative descriptions of the condition, but Soren pointed out: “The fact that people with diabetes are even in a clinic shows that they are motivated to change something in their lives. Understanding this is hugely important for how we approach care. We can feed this back into educational resources so that educators can help people unleash these positive aspects.”
You have to accept you cannot control the outcome, otherwise it is not participation. You have to be prepared to go into unfamiliar territory and know that it will always be easier to minimize involvement.
With a program of this size involving so many different voices, it feels intuitive that an airtight project management system would be needed to keep things on track. However, something Soren and his team learned very quickly was that the very key to success for this initiative depended on creating a forum where people feel free to share.While Novo Nordisk and its partners agreed on the mission of DAWN2, decisions on how this would be best achieved were taken as independently as possible by the many participating actors. Although a more involved discussion could lead to project over-runs, the support of senior management gave the team space to let the conversation flow naturally. Soren said, “you have to accept you cannot control the outcome, otherwise it is not participation. You have to be prepared to go into unfamiliar territory and know that it will always be easier to minimize involvement. Having the support of senior management and the CEO was so important, otherwise, we would have never got to such scale.”
Soren also points to many unexpected benefits as evidence of the value of investing in running a longer participatory process. As partners gained a sense of self-direction in the process, the results were widely shared and applied. Soren elaborated, “As people have taken ownership from our hands, we have seen the results spread to areas where we didn’t even directly work. Even though the study itself was completed 4 years ago, we continue to hear about new local initiatives inspired by the study outcomes from around the world – from diabetes organizations taking inspiration from the educational tools in Asian countries, to European countries now replicating the DAWN2 study on a national setting.”
Headline results: DAWN2TM
1. The Impact of Diabetes on Emotional Well-Being
More than half of people with diabetes reported a negative impact on physical health and approximately half reported a negative impact on emotional well-being. One in seven people with diabetes (14%) had such a low emotional well-being score that they were likely to be suffering with depression.
2. New Perspectives on Family Burden and Support
One-third of family members reported experiencing a notable burden and negative impact of diabetes. Almost half wanted to help more, and were frustrated not knowing how to, yet only one in four had participated in diabetes education. An interesting contrast is that one in three reported a positive impact from diabetes on at least one part of their lives.
3. Support for Active Self-Management
52% of healthcare professionals reported that they asked people with diabetes on a regular basis how diabetes affects their lives, only 24% of people with diabetes reported that they were being asked about this by their healthcare professionals
4. Availability and Use of Educational Resources
While 81% of people with diabetes regarded the diabetes education programs that they had attended as helpful, only 49% were participating in any such programs.
5. Access to Psychosocial Support
Only 20% of professionals reported that they had already received training in the management of psychological aspects of diabetes.
6. Discrimination and Society
One in five of people with diabetes feel discriminated against due to their condition.
With so many people contributing support it was hard for Soren to put a figure on how much this research process cost. But for readers who are considering similar projects within their own companies, Soren did offer assurances that this approach can be replicated in other disease areas. In fact, Novo Nordisk have already completed a similar study in Hemophilia and are using many learnings from DAWN within the obesity space.
To track impact post-survey, Soren’s team started out with indicators set by each of the countries as well as a broader framework of indicators at healthcare system, provider and patient levels. But it was the buy-in from senior management that turned this evaluation framework into something impactful. At a country level, General Managers were actually measured by the extent to which they involved different stakeholders in co-creating solutions for the problems identified in the DAWN2 study.
“Dawn2 was the first study to show on a large scale the impact on family members of adults with diabetes. It is absolutely the biggest study that has demonstrated this.”
One standout outcome were several cases whereby the study results led to changes to national programs and care guidelines. In Italy, the DAWN study results informed the national health policies for diabetes, in Denmark, Algeria, China, US, and many other countries, DAWN2 already contributed to national or regional activities focusing on improving psychosocial and educational resources for people with diabetes and their families. Due in no small part to the rigor of the study and the participatory design process, the results have also informed a wave of groundbreaking research into support services within the academic community; more than 50 scientific publications have been published on the DAWN studies already in national and international journals and the study is one if not the most heavily cited psychosocial study in diabetes. A final set of articles this year will reveal new global results from the study.
Another standout from the study was the contribution that it made to shine a light on how the family support network around people with diabetes are affected by the condition. Soren highlighted this, saying, “DAWN2 was the first study to show on a large scale the impact on family members of adults with diabetes. It is absolutely the biggest study that has demonstrated this.”
While we shall have to wait and see if the waves from DAWN2TM make an impact on glycated hemoglobin rates and quality of life, achievements like the adoption of results into national plans and policies and into the workings of many global and national organizations with a role in diabetes care gives Soren’s team the right to be bullish on results.
The most interesting part of this story is obviously not the concept of doing a patient survey; thousands of these are done every single year. The question to ask however is, how many of these surveys actually turn into something tangible? Soren’s team show what can be achieved through meaningful partnerships and supportive leadership.
It’s a fantastic case study in meticulous execution, but it is also true that many of the underlying principles are known to us. The issue is that in the middle of projects such as these, timelines are often compromised, people lose the space or trust to contribute, and grand plans get ever trimmer. The real lesson is that it takes leadership to see a vision through, to keep continued commitment and investment going, in order to make an impact.
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