The future patient meets the future physician

1. The future patient meets the future physician Marlene Winfield Patient advocate

2. Trust me more • The NHS has spent 63 years removing the burden of care from my shoulders rather than enabling me to care for myself. • Even if I have the most complex conditions, I look after myself 99% of time and yet I am starved of information and tools to do it effectively. • Reward me for caring enough about my health to research it.

3. ....patients are increasingly seen as active partners in their health and healthcare. Engagement is a social change but it is also a necessary change if disease and disability are to be prevented and if costs are to be contained.Future Physician, Royal College of Physicians, 2010, Appendix C, p. 62

4. Encourage me to access and use my health records to manage my health • Try not to think of them as YOUR records, but as records you hold jointly with me. • If I’m not able to understand the records, meet me half way.

5. We anticipate that electronic patient records will play a key role in modern healthcare. We believe doctors should actively support patients in evaluating such records, encourage their adoption, and endorse the patient’s right to hold their own records if they wish.Future Physician, chapter 4, para 4.19

6. However....Future Physician is less clear on changes needed to make jointly held records usable by the patient partner. What can change should change. I challenge the RCP to make patient usability a high priority in future work on record standards!

7. Encourage me to use IT and information to take control of my health • The information revolution will only happen if you encourage me to join it. • In some cases, an information prescription is at least as important as a medical prescription. • Everyone else has figured out how to use my cheap labour to defuse the demographic time bomb – banks, supermarkets, airlines.

8. People have a heightened interest in taking a more active role in their healthcare. Encouraging this interest, using fresh ideas and new technologies, can help to promote safety, efficacy, efficiency and better healthcare utilisation by citizens.Future Physician, appendix C, p. 64

9. Trust each other more and work together better • It is disconcerting to see that primary and secondary care don’t trust each other more. • Put the convenience of the patient higher up the agenda and join things up for me.

11. No doctor can any longer regard themselves as a sole provider of care to the individual patient.Future Physician, chapter 5, para 5.7

12. Be healthily sceptical of shared health records, but use them • Shared records are a starting point for the conversation with me, not a replacement. • If all who share a record do their bit to ensure its quality, and follow RCP guidelines, the record will be safe to use.

13. Take care with my data • 30% of complaints to the Information Commissioner’s Office relate to the NHS. • As your ability to hold and share my data increases, so must your vigilance. • It’s not technology that will undo our relationship, it is carelessness: the memory stick left on the train, information sent to the wrong fax, shared smartcards, records left in abandoned buildings.

14. Embrace the new health informatics • In the future, patients will be informaticians too. • This has implications for the structure and content of records and other health tools. • It has implications for professional training, informatics training, and school curricula. • The computer screen should be the third party in the consultation, not a barrier.

15. This is another area where RCP could take the lead: defining good practice in the IT-enabled clinician/patient interaction.It is another challenge I set you!

16. And finally....We call on leaders of patient organisations and on patients themselves to be more assertive in demanding patient-centred care....We further call on medical and political leaders to encourage and support patients in this assertiveness.Future Physician, chapter 4, p. 26

17. A tool to help you

18. PAREL Patient Friendliness IndexAll major plans should be tested against it • PARTNERSHIP.Does this plan demonstrate clearly that clinician/patient partnership is now the expected norm and does it embody that partnership in visible ways: Nothing about me without me? • ACCESS. Does this plan recognise that patients will increasingly have access to their health records, and that other electronic tools will be shared in the future, such as decision aids? Do proposals reflect that?

19. REPRESENTATION. Do your steering groups, reference groups, etc. have clear and adequate patient representation? If not, is there an alternative for adding patient/public input? • EMPOWERMENT.Does this plan promote patients taking more responsibility for their health and more control of their care rather than just being passive recipients of improved NHS services (important though that is)? • LEADERSHIP.Will this plan help position your organisation for leadership in the future direction of informatics and health and social care, as set out in Liberating the NHS?

20. Cartoon with thanks to the British Medical Journal Patients and information are the two most under-used resources in the NHSDr. Richard Fitton

21. A final challenge to you all: do something about this in my lifetime!Thank you