1. HSRU is funded by the Chief Scientist Office of the Scottish Government Health and Social Care Directorates. The author accepts full responsibility for this talk. Health Services Research Unit University of Aberdeen Health literacy and SDM: thinking in terms of capabilities Vikki Entwistle Presentation at Newcastle University, 13 May 2013

2. Health Services Research Unit Joke literacy? What did the buffalo say to his son when he went to college? Bison

3. Health Services Research Unit What’s the link between health literacy and shared decision making? How do we understand the terms? What kind of question do we think we’re being asked? Thinking in terms of capabilities can be helpful for thinking about health literacy and shared decision-making

4. Health Services Research Unit Health literacy … (1) represents the cognitive and social skills… (Nutbeam / WHO, 1998) is a constellation of skills… (AMA, 1999) is the degree to which individuals have the capacity… (Ratzan & Parker, 2000) Something individuals somehow ‘have’, BUT…

5. Health Services Research Unit My literacy for dining out I use written menus easily in anglophone restaurants! Je peux demander du pain et du vin en France 我会饿死中国 不识字 It’s not just me and my skills

6. Health Services Research Unit Health literacy is situation sensitive The literacy a person NEEDS, and the literacy a person HAS, to engage with their health and health care can both depend on their particular health issues and how healthcare is provided.

7. Health Services Research Unit Do I have sufficient health literacy for Shared Decision Making? A decision-aid full of big words and statistics that I can’t interpret A doctor who doesn’t seem interested, puts me off asking questions, makes me feel stupid A decision-aid that helps me understand the key issues A doctor who cares, invites questions, sees and helps me see that my views matter It depends! Will I be seeing:

8. Health Services Research Unit Which comes first? Health literacy is useful for shared decision-making Sharing decision- making develops health literacy

9. Health Services Research Unit Sharing decision making can support health literacy Broader view of SDM emphasises: Enablement of participation Range of senses in which decisions can be shared Diverse forms of decision support Staff interacting responsively Support for autonomy-capability (understood relationally) Entwistle et al J R Soc Med 2012; 105: 416-421 Positive learning for now and for the future

10. Health Services Research Unit Health literacy … (2) … to gain access to, understand and use information in ways which promote and maintain good health (Nutbeam / WHO, 1998) … to perform basic reading and numerical tasks required to function in the health care environment (AMA, 1999) … to obtain, process and understand basic health information and services needed to make appropriate health decisions (Ratzan & Parker, 2000)

11. Health Services Research Unit A few concerns On some definitions, measures, interpretations a person’s health literacy depends on their: –Making particular choices –Conforming to health behavioral norms The aspirations associated with higher ‘critical’ health literacy can be obscured Some ways of thinking render the promotion of health literacy vulnerable to hijacked for oppressive healthism

12. Health Services Research Unit Some challenges for talking about and assessing health literacy Health literacy consists in something like capacity, skills, abilities. We talk about the health literacy of individuals, BUT Health literacy is partly a product of healthcare environments and the technologies/cultures of communication and interaction. Health literacy can be understood as being valuable FOR a range of purposes.

13. Health Services Research Unit Thinking in terms of “capabilities” might help

14. Health Services Research Unit Capabilities approach Approach to thinking about: –Quality of human lives –Advantage/disadvantage Developed for work on: –Issues of justice –Human development, social policy Associated particularly with: –Amartya Sen –Martha Nussbaum

15. Health Services Research Unit Basic concepts and core idea Functionings –Doings and ways of being Capabilities –Genuine freedoms, opportunities, powers to achieve particular functionings What’s needed for a good human life is capabilities for valued functionings

16. Health Services Research Unit Some important features of capabilities thinking Broad evaluative space Pluralism about what matters Normative individualism Each person is ethically significant Emphasis on freedom Relational ontology Capabilities are socially shaped Dynamic complexity Interconnected capability networks

17. Health Services Research Unit ‘Applying’ these ideas Thinking of health literacy as a capability (or cluster of capabilities) could encourage recognition of: ‘external’ as well as ‘internal’ constituents dynamic and complex nature multiple links to other capabilities and functionings (including SDM) different valuations and priorities

18. Health Services Research Unit Capabilities thinking creates challenges for the assessment of health literacy… But it could help us: discuss the complexities of health literacy and SDM and ‘get real’ about the issues and practicalities of promoting both?

19. Health Services Research Unit Thank you vikki.entwistle@abdn.ac.uk