Euro-Sante :: Euro-Health

Health literacy is moving up the political agenda at the European level, and the hope as always is that the direction of travel is truly empowering for citizens. Having been involved in launching the world’s first digital interactive health channel for public access, in the UK in 2000, one thing I learned is not to assume that everyone is alike, that people make choices and that services need to respond to these choices. I also advised the Council of Europe on work on patient access to information over the Internet.

Much energy will no doubt go into health literacy, but there is little understanding of patient empowerment apart from the use of the words themselves. Health literacy, too, sounds like we ought to know what it means but when dealing with organised provider interests and risk aversion by public funding bodies, caution is required. Much energy has already gone into e-health, with little services for the public to show for years of research and pilots. So we have a weak starting point.

Healthcare systems are poor doing what retailers take for granted, namely the segmentation of their users so they can create a range of service offerings that meet a broad range of people. Compare your hospital to Carrefour. When we launched the digital interactive TV channel, we worked with a simple framework drawing on work by the California HealthCare Foundation, “Health E-People” report. This helped us understand that there were different types of users with different needs, and that in developing content and services we needed to be mindful of this; we also conducted the first and most comprehensive ‘audience user study’ of the British health consumer ever undertaken, using media models to understand how people sought information, what they wanted to use it for and what the barriers were to its use for them. Recent work by the Pew Internet Project has identified the “9 Tribes of the Internet”, which has usefully taken our understanding into population segments based around how people use mobile and Internet-based technologies.

Many of the assumptions of literacy will focus on how people use health information in various forms. But the wider use of technology, including wireless devices, is seen as a critical element of the future of healthcare. So I have combined these two taxonomies to identify what I think are the key health literacy challenges for the 21st century for e-health. I have only sketched out some relationships in the table below (it is not complete as this is a blog entry not a full blown report) but it gives an overview of the sort of considerations that are important.

There are also lessons for policy makers and people concerned with health literacy:

1. Eventually, the individual will have to own their own health record, and decide what to do with the information in it, with whom it get shared, and those who use that information will be accountable to the patient for the use of that information. Health literacy also requires control otherwise there is no reason for me to be engaged — others will help me if I get into trouble. The table below shows that some people will have trouble with this when technologies are a key element.

2. Not everyone will be digitally enabled. This is NOT a digital divide and is NOT evidence of social exclusion, but is a personal choice of people to lead their lives as they wish in a pluralistic society; this is hard for some policy makers to understand and the term ‘social exclusion’ is frequently used without an appreciation of personal choices. The key implication is that services will need to move very slowly to adopt technologies with some types of people. In time, perhaps people may adopt low level access and interactivity, but for many people technological interactivity will remain at best an option not a preference. Perhaps in some future world things may be different, but even today many people do not adopt common technologies, and with rising concerns about energy use and changes to personal lifestyles, we cannot assume the emergence of a uniform technologically based society in the next 5 years.

3.The benefits of technologies in the traditional health technology assessment model will need to pay much greater attention to the segment of the population likely to be involved as their distinct patterns of use and preferences suggest that a one-size-fits-all approach would never work. This means that designing and implementing e-health services, and other health technologies will need to be far more flexible when it comes to the structure of service delivery. This is hard for health systems to understand as they work on the basis of uniform service delivery, paying little attention to unique local or individual requirements. It is a provider dominated environment, not a consumer-centric one.

4. The tribes model suggests that even within health service organisations not everyone will necessarily buy into the technology revolution. Many people work in healthcare precisely because they want to have personal contact with people, and not through intermediating technologies. Since many patients also would have that preference, organisations may need to structure services and staffing to ensure the right mix of people service the public.

5. The great challenge of patient compliance, concordance, adherence (whatever the current term in vogue) may become more dependent on the features of the technologies, their design and ease of use, than on the willingness of the patient to follow a particular care regime. Helping people understand their limitations in using and working with technologies as matter of personal preferences will become very important, which increases the focus on personalisation of healthcare. Similarly, device designers and makers report they see their customer as the doctor (yes, just the doctor) as they specify what technology the patient uses; they do not see patients as customers, and therefore, may need to be encouraged to design technologies that patients and informal carers may use. There is a design revolution waiting here! (where are you Philippe Stark?)

The current approach to health systems in general, especially where the state is the main source of funding, leads to omnibus systems of service delivery, which largely ignore individual preferences — it is a system truly structured to favour provider interests. It would be a mistake to assume a similar approach with e-health and similarly with health literacy. Instead, we should be encouraging approaches which are sensitive to the preferences and usage patterns of individuals and which accommodate to their different literacy styles. In this way, too, we may actually see ehealth services being offered that people will value and use. And that will be a reason for people to become more health literate.

The 9 Tribes of the Internet
(% of US population data)

What each tribe wants from technology

Type of Health Person and their specific health expectations using technology

The Well

The Newly Diagnosed

Those with Long-Term Health Conditions

Digital Collaborators (perhaps 8% of population): always connected through broadband or wireless

a place to jack into the grid

tools for collaboration

want to be involved in experiments to enhance grid services

expect access to health information

symptom-checking and self-diagnosis

smart devices (e/m-health)

access to other people like themselves through social media

mobile and telehomecare in the smart home

expect electronic prescribing, test results, electronic appointment booking and access to their health record

expect email/text based links with care providers as a normal feature

Ambivalent Networkers (7%): use mobile technology selectively, but feel obliged to be connected

need help navigating information overload

may be non-compliant with services that are only digitally provided

offer choices between traditional and technologically enabled services

Media Movers (7%): engaged in sharing content online; but it is not about creativity or personal productivity

offer help to share their ideas, creations and content

offer social networking and opportunities to make connections

access to health information resources, directories and ability to personalise

access to social networking like-minded patients

opportunity to connect quickly and drive content

grid-based communities, and opportunities to drive content

Roving Nodes (9%): actively use mobile devices to organise their social and work lives

help them be efficient, especially as a parent as the majority are female

offer technologies that help them check up on things, particularly using cloud technologies

expect electronic prescribing, test results, electronic appointment booking and access to their health record

symptom-checking and self-diagnostic services that are very user-friendly

use push alerts and reminders for medicines, appointment, treatment plans

provide service options that do not require users to be adopters of the technologies but only of its functionality

Mobile Newbies (8%): really like their mobile phones, but don’t use internet much

offer how-to and coaching material

offer technology support

provide pathways to make finding information and services easy

mobile (on-demand) health information services

offer choices between traditional and technologically enabled services

make sure technologies come with a support service

focus technological support through the mobile device, not the desk-based computer

Desktop Veterans (13%): early internet adopters are happy to work from a desk to search for and access services and information; mobile phones are used to make phone calls

offer good technology and connections

highly self-sufficient searching for services, so offer self-service options

would value tutorials to help them engage in social media

expect electronic prescribing, test results, electronic appointment booking and access to their health record

symptom-checking and self-diagnostic services

may require accessibility technologies to meet their at-home preferences, rather than mobile health

may become an adopter though as long as it meets their self-sufficiency expectations

Drifting Surfers (14%): infrequent online users and users of mobile services; use technology for basic information gathering and would be unlikely to miss loss of internet or phone

don’t force technologically based applications at this group

most likely to drop technology that is hard to use

offer traditionally structured services

make sure any technologies are easy to use, as compliance may be more a function of the technology than the patient’s willingness to comply with a care regime

Information Encumbered (10%): see no great benefit from technology in their lives and are firmly rooted in old media

don’t force technologically based services or solutions at them

help them find information, navigate to services

make sure information is organised for easy use and access and not from multiple sources (will value a single authoritative provider)

offer choices between traditional and technologically enabled services but may be non-compliant with services that are only digitally provided

Tech Indifferent (10%): not heavy internet users, and don’t use mobile phones much and generally don’t see their value

technology is seen as not having any benefit to their lives

value public access facilities if they need access to digitally based services as they unlikely to have the necessary technology

depend on traditionally organised health services in physical locations

are more likely to think of high tech healthcare as low touch, as they associate care with people, not devices

May be prepared to learn to use technology, but it must work easily, and not require special expertise, and not detract from interaction with people

Off the Net (14%): do not use the internet or mobile phone and do not possess the technology, but may have in the past, but found it didn’t offer them anything of value

traditional services are most useful

community-based activities and social venues

may be influenced by baby steps internet courses

depend on traditionally organised health services in physical locations

are likely to be reluctant users of specialist health technology devices, but if required to may have difficulty even with relatively simple procedures

are more likely to think of high tech healthcare as low touch, as they associate care with people, not devices

Want to know more?

There is more heat than light in the e-health technology area, but I have found some material useful. E-health services don’t really exist as a general feature of healthcare systems, as most are still anchored around the telephone, or simple appointment booking and some electronic prescribing.

To get you started, it helps to think not so much about technologies but what they can do and why that is important. These two European reports may be a way in, though the reports may overcomplicate. There is a tendency for e-health to be seen from a service provider’s perspective and less so from the end-user/patient perspective.

Braun A, Barlow J, Borch K et al. (2003). Healthcare Technologies Roadmapping: the Effective Delivery of Healthcare in the Context of an Ageing Society; this document has a useful taxonomy of health technologies.

Cabrera M, Burgelman J-C, Boden M, da Costa O, Rodriguez C (2004) e-health in 2010: realising a knowledge-based approach to healthcare in the EU; this document outlines some of the skills needed for different groups of people who might use e-health technologies.

NOTE: Use a search engine to fine more or email me for a short bibliography.

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