Patients as partners

7 June 2012

Share this on social media:

Issue: 
June/July 2012
Topic tags: 
HEALTH INFORMATION

Hervé Basset reports from the Health 2.0 workshop held recently in Lyon, France

Social networks, blogs, wikis and other patient communities are revolutionising access to medical information, the relationships of patients with their physicians, and the communication between pharmaceutical companies and their customers.

In March, the health sector of the ADBS (Association des professionnels de l’information et de la documentation), the professional association for librarians and information professionals in France, organised a workshop in Lyon, entitled "Health 2.0... challenges and opportunities for medical information".

This workshop, which was attended by 70 information professionals, mainly from the public sector and the pharmaceutical industry, was an opportunity to discuss health 2.0, a term that Philippe Eveillard, one of France’s experts in medical information, defined as knowledge created by patients.

The role of the patient

Health 2.0 brings a new player into the cycle of medical information, the patient, who was until recently a mere spectator in his health. Throughout the meeting, patients (e-patients and expert patients) were at the heart of every conversation. The example of the community Contribution Cancer illustrates the willingness of patients to take more responsibility in the health system and to be involved in decisions that will impact the health of their fellow citizens in future years.

Giovanna Marsico, as project manager of Pôle Citoyen, the patient-communication part of French cancer research cluster Cancer Campus, is a passionate advocate of the role of citizens. She expects that, through the use of new technologies, patients will become ‘players’ in the health system by positively influencing the medical profession and political decisions.

To meet this increasingly strong social demand, healthcare professionals are starting to share their experiences on social networks or developing their own blogs, such as Doctors Web-Masters. This is a deep evolution in medical knowledge. Although it ultimately has little effect upon the medical practitioner in their office, it profoundly influences the amount of health information available on the web to the layman.

This trend can sometimes lead to an overestimation of disease severity and so validation of medical information available on the web is vital. The explosion of medical online information and mobile devices tap into the core values of librarians such as: information validation; sharing and dissemination; and expertise versus lay knowledge. Librarians in this sector, like other health professionals, must now look at patients as new partners, as consumers of medical news, as influencers of the health system and as new sources of medical information.

New initiatives are also allowing health professionals to take back control. In exchange for personal data, the patient could receive personalised information, advice and tailored services delivered by health professionals, possibly with the support of medical associations or medical insurance companies.

Adding value

Some of the more – and less – successful attempts by the pharmaceutical industry to engage through social media were also described at the meeting. These initiatives are the result of a new industry strategy to get closer to patients and clients. They represent a desire to improve the brand image, visibility and e-reputation of drug manufacturers.

This strategy results in a commitment to communicate further via social networks such as Facebook and Twitter but these attempts are hindered, for now, by a reluctance of regulatory authorities that do not allow a direct dialogue between patients and labs. The supposed freedom of Web 2.0 is often confronted with legal reality and some of the less admirable aspects of the web, such as misbehaviour of employees and fake drug sites.

Some experts predict, however, that the future business model of the pharmaceutical industry will be the Pharma 3.0 model. In this model, information as a service delivered to the medical community (health professionals and patients) will be the added value that big pharmaceutical companies will provide to maintain their competitive edge against the generic and counterfeit industries. Within 15 years we will have moved from Web 2.0 to 3.0, where the pharmaceutical business model is no longer based solely on the sale of drugs but also on the provision of services to ensure public health and wellbeing.

Just as Apple does not simply sell devices such as the iPhone and iPad but also the services and content around them (iTunes and apps), the value of the products (the drugs) themselves will become weaker and the added-value services offered by the drug industry around these products will become increasingly strong. This might be in partnership with medical communities, sites of scientific information, applications and mobile devices. As specialists in scientific and medical information, librarians, business intelligence specialists and community managers will certainly have a role to play in this exchange of knowledge.

Changing librarian processes

Similarly, the adoption of 2.0 technologies in companies can change the business processes of librarians. Joël Brun, an information scientist at Sanofi-Pasteur, testified how, in his company, librarians are now "embedded" in R&D project teams, as specialists in scientific monitoring of vaccines, information analysts and corporate knowledge brokers.

In this approach, information collection is based on RSS feeds from science sources such as literature, patents, science news and clinical data. In addition, a dedicated librarian (called a knowledge broker) is involved in key new vaccine project teams. The most important data (articles, patents, news) are posted into SharePoint after a very basic manual process to enrich it with internal metadata (project name, tags, comment, etc.). A newsletter is sent directly from the system to share selected news within the team. Every team member is encouraged to add his/her expertise through new comments to make the best of each piece of information.

The solution has been implemented into SharePoint 2007 with the help of Sword Group (an international services and software company based in Lyon) and will be updated to SharePoint 2010 very soon. The success of the project particularly emphasises the importance of information specialists’ computer skills and their greater visibility and proximity within scientific teams.

The concept of Health 2.0 is marked by a strong demand by patients / clients who see themselves as new actors in their health system and who research medical information themselves on the web. Medical professionals, pharmaceutical companies and information professionals will all need to evolve to embrace the new possibilities that this change brings.

Hervé Basset is an information professional in the pharmaceutical industry. He is also the author of the book From Science 2.0 to Pharma 3.0: Semantic search and social media in the pharmaceutical industry and STM publishing, which will be published in July 2012 by Chandos Publishing. The book considers the Web 2.0 revolution, and the promise of its impact on science communication and the state of Science 2.0. It looks at the impact on the pharmaceutical industry and health and at the promising disruptive technologies of Web 3.0, including semantic search in biomedicine and enterprise platforms.

Further information

2.0 alternatives for accessing Medline

As the requirements in terms of Health 2.0 are increasing, medical databases such as Medline are struggling to provide user-friendly interfaces that are accessible to non-specialists. Many people end up using PubMed "as Google" and missing the rich functionality of the tool.

Born as the first "open" biomedical database, PubMed (the Medline database maintained by the National Library of Medicine in the USA) freed medical information at a time where databases were only available through restricted interfaces such as STN or through CD-ROMs in public libraries. PubMed has obviously been an enormous success within the research and medical communities and is by far the leader platform for searching Medline. Despite a very poor evolution since 1996, the NLM’s website is still the preferred source of millions of physicians, medicine students and academics. But is this huge success (3.5 million searches per day!), a ‘triumph or a disaster’, to quote a famous post (Duncan Hull. Twenty million papers in PubMed: a triumph or a tragedy? O’Really, July 27, 2010, duncan.hull.name/2010/07/27/pubmed-20-million)?

Information professionals despair of ever seeing the day when some elements of semantic search are introduced into PubMed. Meanwhile, the layman who needs to search for medical literature from time to time would like to have a "Google-like" basic search form and, moreover, would like to access the PDF files as fast as possible. End-users don’t really want ‘search engines’ but ‘find engines’.

Born on these expectations and issues, some alternatives have appeared in recent years. We have counted more than 30 serious initiatives that give the same content as PubMed. Among them, GoPubMed and PubGet, recently acquired by the CCC organisation, are probably the most famous.

GoPubMed has introduced automatic clustering filters that are helpful to identify quickly opinion leaders, key journals within a field or genes association. It is a brilliant semantic tool that will delight those who have complex queries to perform in Medline.

PubGet, in its favour, is an amazing tool to retrieve free and legal PDF files. The search experience is based on article availability and not on keyword relevance or completeness. This approach appeals especially to the younger generation, who want to find documents with a minimal amount of time spent in bibliographical databases. Like Google Scholar, PubGet has sometimes been compared to a fast-food restaurant for getting medical literature as fast as possible.

The latest and most noticeable alternative is a French initiative called BibliMed, developed by Francois Boutin, a programmer and teacher in medical information mining at Montpellier’s university, who spoke about it at the Health 2.0 workshop. With the motto ‘Be efficient, Be easy, BibliMed’, BibliMed offers a smart solution to accessing Medline content with an interface that provides the simplicity of Google and the wealth of PubMed.

It combines several benefits of previous alternatives – an intuitive interface and rapid access to content – but it also offers advanced search features to ease iterative relevant queries. For instance, it offers contextual suggestions of MeSH descriptors, the Medline thesaurus – in French and English – as well as qualifiers, links and filters.

PubMed now has serious competitors on the market, and, except for long-term habits, I do not see objective reasons why end-users will continue to use the old-fashioned PubMed interface. I encourage researchers, librarians and health professionals to switch their medical queries to most recent alternatives such as GoPubMed, PubGet and BibliMed, and to enjoy search 2.0 experiences.