Section B

This webinar is part of the first series of episodes promoted by CHERRIES, aimed at exploring relevant aspects for the approach of the project and of the territorial RRI experiments in order to shape more open, inclusive, and sustainable regional healthcare ecosystems. In this webinar, the focus was put on the demand-driven and the role of patient/led user innovation in health. A focus was posed on the role of user/patient and need-based innovation in healthcare, user-producer interactions, regulation, and knowledge production in emerging technology fields. Several questions, and answers, were revolving around the need identification between actors with different perspectives and the implementation of innovation cultures in and between organisations.

Part of interest: The entire webinar.

Target groups: Policymakers (local authorities), Providers, Professional, Patients, CSOs, RPOs, Innovative business, intermediaries

In this article (by Pikkarainen, Hyrkäs, Martin, 2020) are presented the results of a longitudinal study on the success factors of the experience of demand-driven open innovation in health experimented within the framework of the InDemand Project. The focus of the paper is to explore a digital health open innovation ecosystem over the years. The results show that the created demand-driven open innovation model can be used to strengthen the governance of digital health and to improve communication density and knowledge transfer between the ecosystem actors. The findings help policy-makers to use open innovation as a policy instrument supporting hospital and company managers to increase understanding of the opportunities of demand-driven open innovation.

Part of interest: The entire paper.

Target groups: RPOs, Innovation business, Policymakers, Patients, Providers, Professionals

The Innovative Medicines Initiative (IMI), is a Public-Private Partnership initiative (PPP) between the European Union (represented by European Commission) and the European pharmaceutical industry (represented by EFPIA) aimed at improving health by speeding up the development of, and patient access to, innovative medicines, particularly in areas where there is an unmet medical or social needs and by facilitating collaboration between the key players involved in health research. By bringing these diverse groups together around one table, the IMI projects can accelerate the development of innovative solutions to the most pressing medical burdens of our time, including antimicrobial resistance, dementia, diabetes, and cancer. The IMI calls for proposals require the participation of citizen and patient organisations that are invited to become a partner in a project by proposing ideas and suggestions.

Part of interest: See the section “The IMI call process” and its annexes.

Target groups: RPOs, Innovation business, Policymakers, CSOs, Patients, Payers, Providers, Professionals, Intermediaries

The Project “PARADIGM” (Patients Active in Research and Dialogues for an Improved Generation of Medicines), a public-private partnership co-led by the European Patients’ Forum and EFPIA, aimed at providing a unique framework that enables structured, effective, meaningful, ethical, innovative, and sustainable patient engagement (PE) along the lifecycle of medicines and demonstrates the ‘return on the engagement’ for all players. In the project framework, the PARADIGM Toolbox was developed. It is a comprehensive set of tools and practices to support the integration of the patient perspectives into medicine development beyond the focal areas of the project. In the Toolbox are included the PARADIGM co-created recommendations, tools, and relevant background information to make patient engagement in medicines development easier for all.

Part of Interest: See in particular, sections on “Planning patient engagement” and on “Conducting patient engagement”.

Target: Patients and relevant stakeholders in Healthcare

PREFER Project is aimed at strengthening patient-decision making throughout the life cycle of medicinal treatments by developing expert and evidence-based recommendations on how patient preferences should be assessed and inform decision making. In this PREFER’s article (Whichello et al., 2020) a roadmap for including patient preference in the life cycle of medical treatment is proposed. Recommendations to support the development of guidelines for industry, Regulatory Authorities, and HTA bodies, based on a patient-centric approach are included.

Part of interest: The entire article.

Target groups: RPOs, Innovation Business, Patients, Professionals, Providers

NESTORE is an innovative personalised ICT coaching system to support healthy ageing, based on co-design principles. The NESTORE system aims at putting the user at the core of the design process in order to address one of the biggest challenges of our century: “how to develop technologies that are useful and usable for the target users?”. The need collection of users, made by involving 80 older people communities in the UK, is described in the deliverable D7.1. “Needs, values, and suggestions to Co-design”; the further co-design for improving the prototype is described in deliverable D7.3 “Report on end-user improvement for prototypes”, related to the validation initiatives with stakeholders carried out in 3 EU countries.

Part of interest: See Deliverables D7.1 and D7.3.

Target groups: Policymakers, Providers, RPOs, Business Innovation, High Education Institutions

This is a practice promoted by Örebro University. Social Impact Lab (SoIL) is an innovation environment and a programme that focuses on innovations for social sustainability. The programme provides support and expertise for innovative idea development over twelve months, with regular meetings one day a week, involving citizens and stakeholders. At SoIL, researchers and teaching staff from Örebro University participate, as well as staff from other organisations, in creating the right conditions for collaboration and innovation.

Part of interest: The website page.

Target groups: RPOs, CSOs, Innovation business, Policymakers, Payers

This is a Joint thematic policy transfer report made in the framework of Interreg project HOCARE. It is focused on how to boost innovation in-home care by generating new solutions addressing unmet needs identified by formal and informal healthcare providers. It contains a summary of common problems and challenges in generating innovations in-home care based on addressing the unmet needs of healthcare providers and on the identification and analysis of selected good practices in this field. It provides also a transferability matrix and analysis of the identified best practices.

Part of interest: See in particular from Pg. 5 to 9 and from Pg. 27 to 42.

Target groups: Policymakers, Providers, professionals, Innovation Business, Patients

This document (GET Project “Delivering Growth to Health Business” − 2015) aims to support entrepreneurs and Small and Medium Enterprises (SMEs) to identify unmet needs in eHealth following a demand-driven approach, through the provision of methods for implementing in concrete this new perspective.

Part of interest: The whole document.

Target groups: Entrepreneurs and SMEs in e-health

The Innovating care for people with multiple chronic conditions in Europe (ICARE4EU) project was focused on improving care for people with multiple chronic conditions (multimorbidity) in European countries. An estimated 50 million people in Europe live with multimorbidity. The complex health problems of these people and their needs for continuous and multidisciplinary care pose a great challenge to health systems and social services. This Policy brief #22 of Icare4Eu project provides insight into how patient-centred care is currently incorporated in innovative care programmes in Europe for people with multimorbidity. It is aimed at facilitating policy-makers in the development of policies directed at patient-centred care for people with multimorbidity.

Part of interest: The whole document.

Target groups: Policymakers, Providers, Professionals, Innovation Business, RPOs, Patients, CSOs

This article (by de Jong, Wynia, Geluk-Bleumink, 2018) presents an interesting example of the “Care for Elderly Program” in which a patient-centric approach is adopted. The Dutch National Care for the Elderly Programme was an initiative organized by the Netherlands Organisation for Health Research and Development (ZonMw) between 2008 and 2016. The programme aimed to collect knowledge about frail elderly, to assess their needs, and to provide person-centred and integrated care better suited to their needs. Putting the needs of elderly people at the heart of the programme and ensuring their active participation was a key to the programme’s success.

Part of interest: The entire article.

Target groups: Policymakers, RPOs, Innovation Business, CSOs, Higher Education Institutions, Providers

This document (TeRRItoria project, Deliverable D3.1 − 2019) contains an Inventory of 30 bottom-up governance innovation practices. This Inventory is part of a broader work aiming at identifying useful examples, in terms of approaches, policies, and tools, for the development of the 5 “Transformative Experiments” of territorial RRI the project is going to implement. The Inventory focuses on those governance innovations, promoted by different kind of coalitions, that activate a process of “re-territorialisation”, i.e., they work for reversing de-territorialisation trends and thus to foster local development and social cohesion. In particular, the Inventory collects the experiences in which research and innovation actors, in different ways, exercise responsibility toward their territory as they play a pivotal role in governance innovation. In particular, three of the practices of the inventory are focused on health, and it has been set up on the basis of citizen and people needs (including health) and active involvement. These practices are: #11 Living Lab to facilitate learning and collaboration; #22 Cooperation among public services around a local library; and #30 Application of the Dialogue Model for health research agenda-setting process.

Part of interest: The entire document. See in particular: Practice #11; Practice #22; Practice #30.

Target groups: Policymakers (local authorities), Providers, Professional, Patients, CSOs, RPOs, Innovative business, intermediaries

The article (by De Freitas, Dos Reis, Silva, Videira, Morava, Jaeken, 2017) describes an experience of need identification of people with Congenital Disorders of Glycosylation (CDG) to elicit social innovations and to promote people-centred care and research. The needs were collected by the implementation of focus groups involving patients, parents and providers, and professionals. The article contains tables summarizing the needs identified during the experience.

Part of interest: The entire article.

Target groups: Patients, CSOs, Professionals, Providers

In this article (by Teunissen, Visse, Laan, 2013) are provided the results of 7 years of longitudinal analysis of the experience of patient involvement implemented by the Lung Foundation Netherland. NLF can be considered an inspiring practice of RRI institutional change in health for the adoption of a paradigm shift in the research process through patient involvement. NLF holds an extensive network including researchers, health professionals, and patients that are included in the agenda-setting activities. It developed various forms of patient involvement for promoting needs-oriented research: changing its guidelines for proposal writing, communication with patients; participation in projects.

Part of interest: The entire document.

Target groups: RPOs, Innovation business, Patients, CSOs, Payers

This inspiration guide sets out different methods that can contribute towards the success of a multi-stakeholder dialogue for participatory priority setting in health research. A process of participatory and deliberated research priority setting involving all stakeholders can assist researchers and policymakers in effectively targeting research that has the greatest potential benefit to patients, the public, and society. The guide is based on a workshop organized by the King Baudouin Foundation with researchers, patients, patient organisations, care providers, pharmaceutical companies, and research funding bodies. In the document are illustrated the five steps of the Dialogue Model (exploration; consultation; prioritisation; integration; programming; implementation).

Part of interest: The whole document. See in particular the 3 examples of implementation; a reflection on the benefit for such participatory priority setting; the basic elements of this kind of activity

Target groups: Patients, CSOs, Policy Makers, Providers, Professionals, Innovation business, Payers

In this article (by Abma, Broerse, 2010) is presented a study aimed at developing a methodology for health research agenda-setting processes grounded in the notion of participation as dialogue. Seven cases were studied to develop and validate a Dialogue Model for patient participation in health research agenda-setting.

Part of interest: The whole article.

Target groups: Patients, CSOs, Policy Makers, Providers, Professionals, Innovation business

This catalogue, set up in the framework of Cimulact Project, contains a description of methods for involving different groups of stakeholders and citizens in participatory research agenda-setting, that can be applied in various fields including health. Among these methods, can be mentioned: citizens’ vision workshop; vision clustering workshop; research agenda camp (co-creation workshop); who, what & why method; consensus workshop; enrich by co-design; prototyping research programme scenarios; the caravan; group interview with a co-design session; etc. The catalogue contains also a glossary, a table on the usefulness of citizen/stakeholder participation, and guidelines on recruitment. The resources of the catalogue can be usefully implemented also in healthcare.

Part of interest: See in particular Citizen’s vision workshop and Vision clustering workshop.

Target groups: CSOs, Policymakers, RPOs, Innovation business, Payers, Providers

The “James Lind Alliance (JLA) Guidebook” provides guidance about how to apply the JLA patient-involvement methodology for setting research priorities in health named “Priority Setting Partnership” (PSP). This JLA Guidebook contains methods, principles, and steps on how to establish a priority setting partnership and also useful examples of application. JLA has been working to identify research priorities in more than 40 areas including emergency medicine, palliative and end of life care, kidney transplantation, and autism. The JLA approach involves a combination of surveys and workshop interactions between patients, carers, and health care professionals to identify and agree on a “Top 10” list of research questions, aimed to highlight important areas for research.

Part of interest: The entire Guidebook.

Target groups: RPOs, Policymakers, Innovation Business, Professionals, Providers, Patients, CSOs

This resource describes an innovative practice of patient engagement in health research on dementia promoted by the NIHR Oxford Health Biomedical Research Centre (UK). The Centre set up an innovative solution for engaging people with MCI (Mild Cognitive Impairment) diagnosis in research, by organising the “Abingdon Afternoon Tea Club (AATC)”, to connect people with MCI with the information they seek and to set up an informal network of people with experience of the condition.

Part of interest: the entire document.

Target groups: RPOs, Providers, Patients, CSOs, Professionals

The Living Lab for Health at IrsiCaixa (Barcellona) aims to transform the Research and Innovation (R&I) system to make it more open, inclusive, and transdisciplinary inspired with methodologies that follow RRI and Open Science & Open Innovation criteria. This Lab promotes multi-stakeholder engagement interfaces where different actors are invited to participate in the R&I process at different phases of the value chain (priority setting, project design & execution, implementation, evaluation, dissemination).

Part of interest: The website of the Living Lab and in particular the participatory programs for promoting “Health with and for society”.

Target groups: Policymakers, RPOs, Innovation Business, CSOs, Higher Education Institutions, Providers

Within the CitieS Health Project, citizens participate in defining research questions, designing and implementing studies, and analysing, interpreting, and communicating results. This document (Deliverable D5.2, 2019), describes the “CitieS-Health Toolkit”, aimed to enable an interactive experience in designing a new brand collaborative bottom-up intervention or as an aid to existing participatory study, or for developing citizen science projects in urban environment and health. It provides a customised and interactive collection of adaptable instruments to empower researchers, individuals, and citizen groups that want to leverage the power of communities to solve common concerns and deploy actions for making the “world a better place to live in”.

Part of interest: See in particular the part of the Toolkit, devoted to the Identification Phase of the Citizen Science project in this field.

Target groups: Scientists, Citizens, Policymakers, Business innovation, concerned with Health and environmental societal challenges

PREFER is aiming at providing recommendations to support the development of guidelines for industry, Regulatory Authorities, and HTA bodies on how and when to include patient perspectives on the benefits and risks of medicinal products. Patient preferences can give information that is critical for developing medical treatments. PREFER is running patient preference studies in both academic and industry settings. This experience will provide a better understanding of what will be a recommended best-practice approach to patient-preference studies. But they can also tell us how much risk patients think is acceptable for a given benefit. The methods to find out, or ‘elicit’ patient preferences are there, but decision-makers are not sure how to assess and use them. The PREFER Project is running three large clinical patient preference studies (including specific focus groups) in three disease areas: lung cancer, neuromuscular disorders, and rheumatoid arthritis. The resource contains the catalogue of the clinical patient preference studies implemented, made by adding to the PREFER portfolio, other clinical studies that cover different disease areas, methods, and research questions. Based on the case studies, PREFER is providing recommendations and guidelines.

Part of interest: The entire resource.

Target groups: RPOs, Professionals, Patients, CSOs, Providers, Innovation Business

This report is an outcome of the EU project Fostering a Transition Toward Responsible Research and Innovation System (FoTRRIS Project, Deliverable D3.1, 2018). It was selected for the CHERRIES Toolbox as a useful example of co-design of project based on co-RRI concept, and in particular as example of co-definition of needs in different areas. The document describes the activities carried out in 5 Co-RRI transition experiments in different European countries, by the implementation of workshops for system mapping; visioning; project concept design; status quo. One of the experiments concerned women with disabilities in Spain, and in particular about co-definition of needs (including health).

Part of interest: See in particular experiment 7 in Spain, from Pg. 136 to 147.

Target groups: Providers, Professional, Patients, CSOs, RPOs, Innovative business

This Social Lab was established within the framework of the NewHoRRIZON. Its focus was on Responsibility in healthcare Research and Innovation. The Lab promoted the implementation of three real-life experiments from which gain insights into how a transformation towards an R&I system in health that is well-aligned with societal needs can be achieved. These pilots concerned: Enriching funding mechanisms (Pilot Action 1). Patient involvement in clinical service design (Pilot Action 2). Good practices of co-creation (Pilot Action 3). Within this last pilot action, characteristics of successful initiatives and instruments for engaging patients and citizens in agenda setting, research, and innovation were identified.

Part of interest: All the presentation of the Social Lab 7-health.

Target groups: Policymakers, Providers, Professionals, Patients, CSOs, Payers, Funding organisations, RPOs

The SISCODE Toolbox (2019) aims to facilitate the design and implementation of co-creation journeys for the integration of RRI principles within 10 SISCODE laboratories, focussing on better understanding and prioritisation of the particularities of each context. One of the laboratories is dealing also with health issues. The toolbox contains a selection of existing tools for the development of the design-based co-creation process from the context analysis, to reframe the problem, to envision and ideation of a solution, the development of a prototype and its experimentation in a real-world context. Among the co-creation experiences, see that of the Thess-Ahall Living Lab focused on the Challenge to fight loneliness in the ageing population using ambient assisted living solutions.

Part of interest: The entire document and in particular the part on “Reframe the problem”, (Pp. 23-31), within which you can find the tool “Problem definition canvas” (Pp. 24-25).

Target groups: RPOs, CSOs, Innovation Business, Policymakers

This resource is a WHO’s Toolkit aimed at help researchers (in low and middle-income countries), to adopt an inclusive approach in research in health, providing guidelines and tools for incorporating gender and intersectionality analysis into research on infectious diseases of poverty. This Toolkit is articulated in 9 Modules. Module 1 provides an overview of the role and importance of gender and intersectionality for research on infectious diseases of poverty. Module 2 gives an overview of different approaches to incorporating an intersectional gender lens. Modules 3 and 4 describe intersectional gender analysis activities at the research design and development phase. Modules 5 to 9 describe various ways to use the intersectional lens in different kinds of research.

Part of interest: The entire document: in particular modules 3 and 4.

Target groups: RPOs, Business Innovation, Higher education institutions

The preparation and launch of a regional Call for Needs is the first step of the CHERRIES territorial pilots. The broadening of the process of need identification to make the process more inclusive and responsive to unmet needs and societal challenges in health at the territorial level is an important aspect of the CHERRIES approach. The set-up of a good need inventory is a necessary precondition for the definition of relevant needs and the design of the following process of co-creation for the innovative solution in each region. The open and bottom-up approach of the CHERRIES Calls for needs provided the opportunity to actively contribute, both to individuals and organisations, to key healthcare stakeholders of the R&I system and to individual citizens. On the website as examples are presented the three Call for needs prepared in CHERRIES context.

Part of interest: All the three “Call for needs”.

Target groups: Providers, Professionals, RPOs, Innovation Business

The experience of the InDemand Project is an important reference for the development of the CHERRIES Call for needs. This document is an example of the Call for needs or Call for challenges published within that project. InDemand set up and tested a new co-creation model where healthcare organisations (Challengers) and companies (Solvers) co-develop digital health solutions, with the economic support of public regional funds managed by Regional funding organisations (Funders). The first phase of the model is focused on the identification by the challenger of unmet needs (challenges) identified with the involvement of healthcare professionals.

Part of interest: See the challenges related to health and disabilities and those related to aging.

Target groups: Providers, Professionals, RPOs, Innovation Business

* This resource is available on request, contacting the CHERRIES.

Socialchallenges.eu is an open Platform on social Innovation, funded by EU H2020, which adopted a challenge-based innovation approach to solve societal and environmental local problems. Among the Platform objectives can be cited: supporting European stakeholders (public, private, non-profit) in defining and prioritizing social and societal challenges; encouraging a broad participation of social innovators, social entrepreneurs, start-ups, and SMEs to identify, co-develop and test concrete solution to these needs. The Platform was aimed at creating a social innovation marketplace, where Public Authorities, Private Companies, or Third Sector Organisations were able to post and give visibility to social and environmental challenges they wanted to solve. Different “Challenger owners” (public, private, NGOs, etc.) uploaded their social challenges and were supported by the project to find innovative solutions.

Part of interest: See, in particular, the challenges related to health and disabilities and those related to aging.

Target groups: Policymakers, RPOs, Innovation Business

Patient and Public Involvement and Engagement (PPIE) Programme, by Ludwig Boltzmann Gesellschaft (LBG), carries out research “with” or “by” patients and members of the public rather than “to”, ”about” or “for” them). PPIE aims to empower the public and people with lived experiences by involving them in research. Projects address patients’ and the public’s needs and embrace their knowledge from personal experience or practice during the different phases of the research cycle (from setting the agenda to interpreting data) and research governance. Based on this approach, LBG launch specific Calls for Public and patient involvement and engagement in Research.

Part of interest: See Section “Fund”.

Target groups: RPOs, Providers, Patients, Innovation Business, CSOs, Professionals

The ANCES Open Innovation is an Initiative promoted by ANCES, Asociación Nacional de CEEI Españoles, focused on the identification of industrial needs and on the set up of call for solution to SMEs and innovation business able to address such challenges. On the website of the Initiative, there is a general presentation of the procedure and examples of the last 2020 Ances Call and the identification of technologic needs expressed by several enterprises, among which, for instance, that one published by Abbot Nutrición (Ances Open Innovation | ABBOTT).

Part of interest: The website of the Initiative and in particular the page concerning the Needs published in the ANCES Open Call 2020.

Target groups: Intermediary innovation organisations, Funding organisations, Innovation business, Start-ups, SMEs

The “Gendered Innovations in Science, Health&Medicine, Engineering and Environment” is a project initiated by Stanford University in 2009. The goal of the project is to provide scientists and engineers with practical methods for sex and gender analysis. To match the global reach of science and technology, methods of sex and gender analysis were developed through international collaborations. The website contains several theoretical and practical resources concerning: methods of sex and gender analysis and checklist; case studies coming from different disciplines; intersectional design; policy recommendations and videos. A specific section of the website is devoted, among others, to the presentation of case studies that provides practical examples of how sex and gender analysis lead to gendered innovations in medicine. It is important to take into account and to integrate gender issues in innovation also in applying demand-driven and user-led/people-centric/open innovation process in healthcare.

Part of interest: The entire website. In particular, see the sex and gender analysis section and the section on case studies in health and medicine.

Target groups: Providers, RPOs, Innovation business, Higher education institutions