New DDEA Public Advisory Panel: ‘We All Share the Ambition of Making a Real Difference’

Posted on 09.04.2024

The members of the new Danish Diabetes and Endocrine Academy (DDEA) Public Advisory Panel have high ambitions for the academy’s future public and user involvement strategy.

– The hope is that we succeed in producing something meaningful – something that might even help open sceptic eyes to the benefits of user involvement.

So says Camilla Hamre, one of the members of the newly established DDEA Public Advisory Panel at its first meeting in Odense 15-17 March.

As a result of last year’s Public and User Involvement workshop, DDEA has established a panel of people with different connections to endocrine diseases. The goal is to have the Public Advisory Panel help formulate a public and user involvement strategy for DDEA’s future education, networking, and grant activities.

From the left: DDEA Managing Director Tore Christiansen, Public Advisory Panel: Søren Dixen, Maja Michelsen, Matilde Behrens, Henrik Lund Sørensen, Alexandar Lauritzen (back row), Louise Kjær (back row), Camilla Hamre (back row), and Consultant Ingrid Willaing Tapager.

Motivated by a Meaningful Mission

The World Health Organization sees user involvement as an increasingly recognised, integral part of health care and a critical component of safe, people-centred services.*

The nine members of the new DDEA Public Advisory Panel are all motivated by the chance to bring about real changes in the academy and help challenge negative stances on public and user involvement in health research.

– The idea is to help shift the view that some researchers still hold – that user involvement is an obstruction to the research process rather than an added value. In the end, the goal of health research is to help its end users, so we hope to be able to aid in changing this culture where it makes sense, says Alexandar Lauritzen, a member of the DDEA Public Advisory Panel.

*World Health Organization: Patient Engagement – Technical Series on Safer Primary Care

A Palette of Different Experiences

The members of the DDEA Public Advisory Panel have different lived experiences with endocrine diseases such as type 1 or type 2 diabetes, osteoporosis, and Addison’s disease.

It takes no more than a few minutes of observing the new Public Advisory Panel to conclude that it is a mix of people dedicated to bringing their best when brainstorming ideas.

– We gain something ourselves by contributing as much as possible in this function. Growing with our experiences, learning together, and not being afraid of challenging ourselves is very important. And it is also extremely rewarding, explains Henrik Lund Sørensen, a member of the DDEA Public Advisory Panel.

Some members have little to no experience with user involvement, but every lived experience matters.

– I was not sure what I was getting into, but I wanted to contribute with my experience as a parent to a child with chronic disease. During our first panel meeting, it became obvious that the diversity of our experiences was viewed as a great resource, says Louise Kjær, a member of the DDEA Public Advisory Panel.

From the left: Matilde Behrens, Alexandar Lauritzen, Ingrid Willaing Tapager, Tore Christiansen, Louise Kjær, and Camilla Hamre.

Hopes and Plans for the Future

The DDEA Public Advisory Panel’s first meeting served as a kick-off session to frame the role and tasks of the panel. After the meeting, the members expressed high hopes for the panel’s future work.

At first, it was unclear to me what being on this panel entailed, but bit by bit it became clear how we could contribute with our insights and ideas. Now, I feel inspired to continue this work, especially because we all share the ambition of wanting to make a real difference, says Matilde Behrens, a member of the DDEA Public Advisory Panel.

At their first meeting, the Public Advisory Panel already started generating ideas and inspiration. During the brainstorm, ideas such as user ambassadors bridging users and researchers, an online Public Advisory Panel, activities that help users and researchers ‘speak the same language’, and sharing of information across endocrine diseases like the use of pumps to manage Addisson’s disease like insulin pumps were aired.

Another important task was to identify DDEA’s goals for their public and user involvement.

– One thing is helping cultivate the right mind-set in certain research cultures, but it is just as important to do so with the ones facilitating the user involvement. We need to make a viable strategy for DDEA’s user involvement to ensure that the academy actualises its ambitions in this regard. Already now, we have ideas for making structural changes that we are quite excited about, says Maja Michelsen, a member of the DDEA Public Advisory Panel.

About the DDEA Public Advisory Panel

  • Currently, the DDEA Public Advisory Panel consists of nine persons: Christina Nybye, Julie Lund, Matilde Behrens, Søren Dixen, Maja Michelsen, Camilla Hamre, Henrik Lund Sørensen, Louise Kjær and Alexandar Lauritzen.
  • The Public Advisory Panel consists of up to 10 persons collectively with substantial experience living with or being a relative of a person with diabetes and/or other endocrine diseases.
  • The DDEA Public Advisory Panel will have one more physical meeting and at least two online meetings this year.
  • The purpose of the Public Advisory Panel is to provide recommendations, ideas, and feedback to the DDEA Secretariat on strategy for connecting researchers with society through education, networking activities, funding and communication activities.
  • The DDEA Public Advisory Panel is part of DDEA’s Public Involvement and Outreach Programme.

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