Dealing with the challenges of polypathology, together: What’s next?

last modified: 08/04/2011 11:17

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Are you sure you want to delete this section?Dealing with the challenges of polypathology, together: What’s next?: Introduction
 
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Introduction

In March of 2009, we wondered if it would be possible to co-create a book on polypathology, within a year, from scratch, with volunteer contributors from all over the world, using online social media and with no financial incentives.

Well, we did it!

Once the lead contributors produced the first version of each of the chapters, and they were reviewed by an editor-guarantor (ARJ), we embarked on a massive e-mail campaing to reach potential contributors (1). The outgoing messages, which were sent in 17 waves, were adapted to the language, area of interest and contents of each of the message recipients.

Between December of 2009 and March of 2010, 550 people were targetted. They included not only experts suggested by lead contributors, but also the corresponding authors of articles that had been selected as references in the initial versions of the chapters.

In addition to the e-mail outreach efforts, we included banners on key websites of the Andalusian School of Public Health (2) and the Andalusian Ministry of Health (3), and in the blogs of two of the lead contributors (4, 5). We also optimized the contents of the OPIMEC platform for top search engines and created a space on Facebook describing the project and inviting participation.

During the four months in which the chapters were available for contributions, the OPIMEC site received more than 13,000 visits from people in 80 different countries. Of these visitors, 55 people from 18 countries made 235 contributions to the chapters. The theme that received most comments was health promotion and prevention (Chapter 3), with over 40% of the contributions, followed by patient education and self-management with 10% (Chapter 5).

By the end of March of 2010, all of the draft chapters had been reviewed at least twice by one or more of the editors. By the time of the launch, in early June of 2010, the entire edited version was available as a free hard copy or in portable document format (PDF), for free download (6). Each of the chapters will also continue to be available through www.opimec.org, as a «live» version, enabling continuous updates and improvements.

Are you sure you want to delete this section?Dealing with the challenges of polypathology, together: What’s next?: What did we learn during the process?
 
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What did we learn during the process?

We gained valuable insights during the co-creation of the book, particularly in relation to the use of online collaborative tools and the engagement of experts in the process.

The following lessons are worth highlighting, as they may be useful to those interested in embarking in similar exercises:

- Technological glitches are unavoidable: At times, we faced technological problems with the tools that we used to facilitate content co-creation, which made the process frustrating to the editorial group, to the support team and to the volunteers who were willing to contribute to the book. Along the way, some contributors found such glitches unacceptable and decided to give up, despite having a help line available as well as the option to make contributions through e-mail at any time. We hope that these colleagues will be keener to join the project in the future, and that they understand that, as they continue to evolve, information and communication technologies will continue to present challenges to early adopters.

- It is difficult to match versions of the same document as they evolve in multiple languages at a different pace: To make facilitate this process, we produced the initial version of the book in English, translating and incorporating contributions in Spanish as they emerged. Throughout the process, however, all comments were visible in both languages in the corresponding section of the chapter.

- Firm deadlines for contributions must be set and enforced: This was perhaps the greatest challenge, as prominent colleagues pleaded to have additional time to provide their input. Instead of jeopardizing the overall project by extending the timelines, we thanked those interested and reiterated that their contributions would be welcome, at any time, as the book would continue to evolve on the OPIMEC platform, as a living entity.

- It is essential to have a clear common goal, a diverse editorial group, and institutional support: By starting with 10 clearly defined topics, we could enlist leading contributors quickly. Having a strong and diverse editorial group enabled us to distribute functions in a way that made the workload manageable throughout the process, while building on individual areas of strength. Thanks to the strong backing from the Andalusian Ministry of Health, we could set the date for the book launch during Spain’s presidency of the European Union. This acted as a strong incentive and justification for the contributions to be made within the established deadlines.

- Copyleft and Contributorship are viable options: This book is a living proof that it is possible to motivate a large group of experts to embrace «copyleft» (7) and «contributorship» (8), as viable alternatives to their more restrictive siblings, «copyright» and «authorship».

Are you sure you want to delete this section?Dealing with the challenges of polypathology, together: What’s next?: Now, what? Are we ready to meet common challenges, together?
 
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Now, what? Are we ready to meet common challenges, together?

 

 The use of a standardized structured format, with key questions as the main drivers for content development in all chapters, also paid off. The book not only provides easy access to the best available knowledge on 10 major aspects of polypathology but also a long list of unaddressed questions and issues that require urgent attention.

We feel that the collaborative work that resulted in this book could easily become the foundation for joint projects that could fill many of the identified gaps, in record time.

The following are some examples of questions that could drive the design, execution and dissemination of large-scale collaborative projects through which we could attempt to meet the challenges created by polypathology, at all levels:

- Is it possible to promote an ongoing global survey to monitor polypathologies in different regions of the world simultaneously?

- Is it possible to create a taxonomy that could facilitate the exchange of knowledge and the evaluation of innovations for the management of polypathology worldwide?

 

- What strategies or interventions are needed to facilitate the development of the knowledge base, attitudes, skills and behaviours required by professionals to bridge social and health services in a way that would contribute to meeting the unmet methodological, technological, management, social, political and economic needs associated with polypathology?

- Are polypills cost-effective interventions for polypathologies? If so, how can their widespread use be encouraged?

- Is it possible to design, implement and evaluate a flexible model of care that brings together the power of de-centralized innovation and leadership by front-line professionals and the public, with the efficiency of a centralized policy-making and management structure?

- Is it feasible to use online social media to create and sustain a global network of self-management and peer-to-peer resources for people living with multiple chronic diseases?

- What are the new functions or whole occupations or the new roles for existing occupatoins that are required to bridge or blend social and health services in a way to that would meet the needs of people living with multiple chronic diseases and their caregivers?

- To what extent could effective innovations for the management of polypathology be adopted and adapted across different regions of the world?

- How do different combinations of diseases or disease trayectories influence the supportive and palliative care needs of people with polypathologies and their caregivers?

- What is the impact of multiple chronic diseases on the lives of caregivers? What new roles, workflows and supportive services are needed to relieve their burden?

- Could Integrative Medicine promote the demedicalization of the management of polypathologies? Could it promote greater acceptance, among patients and caregivers, of the unavoidable suffering associated with multiple chronic diseases and the ageing process?

- What are the total costs associated with the management of polypathologies?

- Does the level of complexity associated with most polypathologies exceed the capacity of GRIN technologies to offer tangible solutions?

- Could key regions be transformed into living laboratories with the conditions necessary for the development, refinement, implementation and evaluation of innovative ways to optimize the management of polypathology?

- What strategies are needed to position the management of polypathology among the top priorities for leading political, academic, community and corporate organizations interested in the sustainability of the health system?

Answering these questions, and many others that remain unaddressed, will not be easy. It will require a very creative blend of public engagement; creative partnerships among the government, academic institutions, the public and industry; rigorous transdisciplinary research and development; strong input from social and political scientists; visionary technological innovation; effective knowledge mobilization and management; and extraordinary political will.

 Such effort will require unprecedented levels of generosity to overcome the powerful perverse incentives that have made us so vulnerable to polypathology.

We have already proven, by co-creating this book through OPIMEC, that we can work across traditional boundaries, contributing to a common ambitious agenda. We must now scale up the level of our commitment to create and implement the potent interventions that are required to overcome the apparently insurmountable challenges we face, together.

 

Are you sure you want to delete this section?Dealing with the challenges of polypathology, together: What’s next?: Contributors
 
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Contributors

Andrés Cabrera wrote the initial draft of this chapter in Spanish. Alejandro Jadad wrote the last version and translated it into English. This chapter received contributions from Begoña Isac, Diana Gosálvez, Alejandro López and Antonio J. Contreras (in Spanish).

Responsibility for the content rests with the main contributors and does not necessarily represent the views of Junta de Andalucía or any other organization participating in this effort.

Acknowledgments

Book editors and contributors.

How to reference:

Cabrera A*, Jadad AR*, Isac B, Gosalvez D, López A, Contreras AJ. [*Main contributors]. Dealing with the challenges of polypathology, together: Whats next? In: Jadad AR, Cabrera A, Martos F, Smith R, Lyons RF. When people live with multiple chronic diseases: a collaborative approach to an emerging global challenge. Granada: Andalusian School of Public Health; 2010. Available at: http://www.opimec.org/equipos/when-people-live-with-multiple-chronic-diseases

 

Are you sure you want to delete this section?Dealing with the challenges of polypathology, together: What’s next?: References (click here to access)
 
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Are you sure you want to delete this section?Dealing with the challenges of polypathology, together: What’s next?: Creative Commons License
 
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Creative Commons License

Creative Commons License

Dealing with the challenges of polypathology, together: What’s next? by Cabrera A and  Jadad AR is licensed under a Creative Commons Reconocimiento-No comercial-Sin obras derivadas 3.0 España License.
 

Comments to the whole document Comments feed

ebarranco
Ezequiel Barranco Moreno
05/05/2014 18:56

En relación con la pregunta sobre cuidados paliativos:

Al inicio de cualquier Unidad el reto es siempre el mismo y corresponde con la necesidad primaria del paciente: Controlar un síntoma difícil. De acuerdo con ello se dotaron a los equipos de un potencial humano mínimo: Médico y enfermero y unas redes de apoyo básicamente clínicas: Unidades del dolor, oncología, radioterapia... Conforme las Unidades fueron desarrollándose y controlando mejor las necesidades físicas, fueron apareciendo otras necesidades de difícil abordaje (básicamente la atención a las necesidades psíquicas y espirituales y sociales), para las que se necesita más tiempo y dedicación y mayor preparación y motivación, pero también más recursos y redes de apoyo (psicólogos, trabajadores sociales, voluntarios, residencias y otros recursos sociales). En ese campo no sólo no se está mejorando sino que hay mayores dificultades (veanse los recortes en la dependencia) y, creo, es el habría que volcarse especialmente para facilitar la interacción entre todos los sectores olvidando las divisiones administrativas y geográficas y mejorando los sistemas de comunicación e intercambio.