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.
See the table I prepared linking the Pew 9 Tribes with my analysis of its applicability to e-health/healthcare. (PDF here [Ehealth and the 9 Tribes] as tables don’t format on the post very well, sorry)
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.