Project ideas for user involvement
Participants at the CODIAC conference formulated a range of ideas for filling the gaps in user involvement practice and research.
The family (including children and adolescents) as a setting for mutual and positive involvement
Solution
Aim is to map the life stages for young people with T1D or T2D and their families in relation to family involvement. We want to develop a model which could inform guidelines/a tool which could be used within care/research for family involvement across the life course.
What we need: A PhD Scholarship
Next steps
This would make a great PhD study. With 3 sub-studies:
- A review of the literature on role of family in user involvement for young people with diabetes, informed by general literature on developmental psychology and knowledge from Diabetes and other chronic illnesses relevant to children, e.g. asthma and psorisis.
- Three qualitative studies, with young people, family members and health care professionals, about their views about family user involvement in care.
- Findings from the qualitative studies will be triangulated to produce a model for family involvement. This can inform development of a guidelines/ a tool to facilitate good practice for family involvement.
Contact persons
Dan Grabowski: dan.grabowski@regionh.dk
Mads Fly-Hansen: mads@flyogco.dk
The clinic as a setting for mutual learning and positive involvement
Ideas and solutions
To increase and optimize communication between the person with diabetes and health care personnel in health encounters (what is the element of communication)
- In the communication between the person with diabetes and health care personnel emphasize more a general understanding of a chronic disease as a part of everyday life
- Strengthen the curriculum of health professionals – continuous trough the education - both at campus and in practice studies. Use life stories in teaching.
- The use of health brokers as a centralized online corps
- Studies (qualitative /quantitative) focusing on how feedback can improve the quality of care.
- Important to promote and use an overall communication framework shaping the environment of safety.
Contact person
Marjolein Iversen: marjolein.memelink.iversen@hvl.no
Ideas and solutions
- Studies focusing on new knowledge on how users want to get involved, which system incentives are desirable.
- Users educate policy makers and involve both in developing user strategies
- System incentives to promote and engage in user involvement: mandatory to have users in hospital boards, committees, research studies. Receive payment for these jobs.
- Involve users in national health research strategies and guideline development
Contact person
Marjolein Iversen: marjolein.memelink.iversen@hvl.no
Ideas
- Conduct studies both qualitative and quantitative for both users and HCP about:
- Experience being involved in their care and how do they want to be involved in their care.
- Possibilities, barriers and limitations.
- Plan study act, little intervention, follow them up and evaluate both with the users and HCP
Solutions
What are the expected benefits?
- Gain knowledge about how users want to get involved and how then HCP can do changes in response to their stories.
- Insight mechanism why and how it works which is not well described in the literature.
- Increase their responsibilities, right decisions for them and more flexibility in their daily life, less stress.
What are the expected challenges?
- Changes in roles could increase for both
- More stress
- Changes in guidelines and routines
Next steps
- Invite people to a first meeting to be part of the discussion. Spread the news. Through everybody attending this meeting
- A team to start the study
- Team will prepare an agenda for the study
Who can do it?
- Users/HCP/ Researchers
What resources are needed?
- Funding
- Permission from management to participate
Contact person
Annesofie Jensen: anejns@rm.dk
Clinical research: the value and impact of the involvement of users
Solution
- Establishing network
- Generic network
- Informal setting for PPI
- Shared Learning
- Website to support decision making
- Overcoming barriers
- Getting buy-in from all stakeholders
- Recognition of the need for more, for diversity and inclusion, engagement with local communities (messenger for minority groups)
- Communications: opportunities, best practices, you go to their network
- Feedback
Contact person
Nicola Thomas: nicola.thomas@lsbu.ac.uk
Solution
- Learning of public involvement use of other research, into PPI
- Adjusting the communication to audience, sharing relevant impact: i.e. improved recruitment by using a co-created Participant Information Sheet
- Value to the research and clinician vs. Value to the individuals living with a condition: eg. more equal, informed and confident: how do we measure this? Focus groups, baseline/mid/exit interviews.
- Long-run solution: young researchers on board, to bring into research, start PPI early
Next steps
- Establish framework for shared learning, mentoring,
- Identify ambassadors for PPI, preferably couples of researcher and patient
- Work alongside with researcher associations
- Identify stakeholders + individuals interested in developing further
- Work alongside patient organisations
- Resource allocation
- PPI in professional research networks / societies
- Co-created with users
Contact person
Nicola Thomas: nicola.thomas@lsbu.ac.uk
Background
Group Concept Mapping process statement no. 80: It is very important but also uncommon that results and technologies from projects involving people with diabetes and other members of the public are made available to everyone, not only those involved?
Overall solution/idea
Encouraging to involve users all the way through the designing (or even before) and disseminating results of studies
Elements
- Incentives and/or requirements from funders to include users.
- Developing tools and methodologies to evaluate the benefits of communicating the results and experiences of taking part in studies
- Participants as ambassadors
- Involve participants in dissemination committees (newsletters, presentations, meetings) for communication of results to users, researchers, funders etc.
- Communication in lay language at web sites
- Part of PhD program to focus on communication and involving users
Contact person
Peter Rossing: peter.rossing@regionh.dk
The language and the concepts: How do we put involvement into words, so it fits with the 'real world'? Do we need a shared language?
Idea
Open innovation platform where users define their questions/ideas/needs
We suggest that users define their unmet needs, ideas or questions in their own language and "post" them on an open platform. These ideas can be accessed by professionals/researchers and they can contact users to develop this idea further into a research or a practice project.
Development
The platform is developed in a collaborated project involving users, IT professionals, health care professionals. The platform should be anchored with an organisation (or a consortium of partnership organizations) which can ensure IT support and dealing with the content.
Challenges
- the platform will not be enough, we need users who use the platform, organisations hosting workshops around that
- who funds the development and running of such a platform?
What needs to be done
Academia and the health care system need to commit to using the platform and define how they should use the ideas presented.
Coordination
It needs a core group (consisting of users and at least one representative from academia/health care sector/funding partner) that can take the idea further.
Contact person
Helle Hansen: helle.hansen@email.dk
Ideas
- Emphasis on relations – focus on communication
- Focus on connections – concern/respect/agreement
- Awareness on vocabulary – HCP need to learn the (diverse) language of the users/patients
- HCP must learn to meet the users/patients (asking questions/understanding/listening)
- Education: HCP must be coaches (also)
- Shared definitions – what is respect? What is an agreement?
- Focus on curiosity (in the meeting) – check-in
Solutions
- Training and education of users/patients
- Tools: feed-back and teach-back /explore expectations
- Empowerment
- Awareness on vulnerable groups
- Training and education of HCP (in-house and students)
- Questioning attitude of HCP (open, curious, user oriented, everyday life oriented)
- Based on user needs/experiences/perspectives
Needed
- What are the existing tools for education? Which do we need? (e.g. dialogue tools).
- System must be supportive of change:
- Language in guidelines must be adjusted
Ideas and solutions
- Users train health related students
- Course where users train professionals
- User led train-the-trainer course
Contact person
Sandra van Dulmen: s.vandulmen@nivel.nl
The voice and the impact of the users: Can users increase their impact as a movement instead of an association?
Solutions
- Larger exposure of correct info on diabetes on various platforms - #iamnotmydiabetes or similar #
- New influencers, help and prepare advocates
- Educational kits for school classes
- Alternative TV- shows. e.g. VIPs without diabetes forced living as a diabetic for some days
Ideas
- More and correct information delivered in new ways
- Mobilize and encourage strong users to start or participate in a movement
Next Step
- Must start movement now.
- Contact The danish diabetes association (Tanja Thybo). We will further try to contact EUDF
- Activate User groups + locating forefront users “on a mission” to update the public in correct diabetes understanding, eliminating old precievements
Contact person
Tanja Thybo: tth@diabetes.dk
The local community as a setting for synergy and positive involvement
Solution
This intervention establishes and tests a framework for action to address:
- leadership and governance support;
- mobilisation and competence building of professional stakeholders; and
- identification, accessing and connecting to vulnerable citizens suffering from multimorbidity at local community level.
The intervention applies three action steps:
- Local community contextual analysis for mapping community structures, organisations, demographics and for understanding perceptions and attitudes of professional stakeholders and citizens around healthy living and multimorbidity in the community.
- Connect to first social sector institutions and departments, and subsequently health sector institutions and departments, to discuss the idea of organizing a joint intersectoral community-based initiative on multi-morbidity at community level. Negotiate overall terms and framework for action.
- Organize an intervention development process together with professional stakeholders and the target group of citizens using the CBPR Model (capturing the history, values, norms, unmet needs, community resources and ideas for intervention and further planning steps).
Next steps
Presenting the overall concept and idea with key partners in our respective cities/communities and reconvene for a discussion in the CODIAC-Community-Group
Contact person
Janet Harris: jharshef@gmail.com
Technology and social media: Potential or barrier for positive involvement?
Solution
- Summit about user-involvement by users, for users.
- Develop network of expert users/ social media influences/ bloggers etc.
- Invest time and resources in cultivating relations to establish credibility and trust.
Benefits
- Better user-involvement
- increase the reach, including more people and more diversity
- Defining better questions
- Improving and extending the dialogue between users and HCPs/researchers.
Challenges
- To get all people with all the different types of diabetes included. Right now Type 1 diabetes is apparently more visible on SoMe, how do we get others included?
- SoMe is for many users related with peer-support, and as source of information about self-management tips and tricks which can be a huge resource for many users.
- HCPs doesn’t necessarily have the knowledge about the scope it can be for PWD, therefor they might not refer to FB groups, blogs, communities that can benefit the users.
- Is it a problem that HCPs doesn’t get involved in SoMe e.g. discussions on FB, open source networks etc.
- User-owned, user driven, extremely rich source of knowledge. But HCPs need to engage with this, yet relatively few actually do. Why?
- SoMe is unexploited in research; it needs to be seen as a resource for the purposes of generating (international) knowledge e.g. recruitment to participation.
- Technology as insulinpumps, glucosensors, bloodglucosedevices, smartpens, open source solutions, mobile phone apps are huge themes on SoMe/Online communities, influencers are rating technology/posting videos.
- Under the context of healthcare institutions there is a sense that content must be strictly controlled.
- Can expert users act as advocates to give more credibility to HCPs and researchers within the wider community of users.?
Next steps
The working group is going to meet within the next two months to discuss strategi, planning and focus for the SoMe Summit/network.
Contact person
Linda H. Raimond: linda.raimond@regionh.dk
Vulnerable groups as powerful users: the need for a culturally embedded approach
Gaps
- There is a need for collecting examples of good practice on how to include vulnerable groups as users. The collection should ideally be followed by an overview and dissemination in a publication
- There is a need for recognizing that vulnerability is not an individual but a societal responsibility. This should e.g. be adapted into the planning of health care services
- There is a need for concrete projects to show case how to empower staff and vulnerable persons
Ideas
- Develop cross-sectoral competencies by adapting existing training of professionals to meet persons in vulnerable positions. E.g. Social workers and social nurses
- Develop methods to improve health empowerment by proxy. E.g. Through social and education sectors and civil society
- Make business cases for investing in vulnerable populations
Next steps
- Apply and test existing tools on user involvement to address vulnerable populations
- Adapt existing training of professionals, to meet persons in vulnerable positions. E.g. Social workers, social nurses and staff outside the health sector
- Plan national (Denmark) and international conferences on vulnerable citizens, where user involvement is one of the tracks
Contact person
Peter Bindslev Iversen, peiv@regionsjaelland.dk