1. Many Patients ONE VOICE New Zealand Patient Symposium 4 April 2017 Steve Crew Diabetes New Zealand

2. Ensuring the sustainability of the patient voice

3. Observations 27,011 charities $40 billion asset base
$15 billion in annual income
114,000 not-for-profits
$6 billion into the economy
70% of kiwis give to charities

4. Trends The world we work in is changing - FAST!
Technology is changing the way people engage
Finance sources are changing
The capability expectations at governance & management level are rising
The transparency & accountability expectations are higher than ever
How we work is constantly changing
Partnering with others is expected
New business models are becoming the norm

5. Trends
Clarity on organisational purpose and strategy is more important than ever
CEO, the board & our staff need to be appropriately skilled to work in a disruptive environment
Fundraising
Shifting power bases
Collaboration and consolidation will be increasingly likely for sustainability
Managing stakeholder perception is vital – we must be seen to be having the impact we said we would
Poor operators will struggle but… Good operators will wield a lot of influence

6. The patient voice declines
% decline in membership
20% decline in membership
Last 12 months 7% decline in membership
2/3 of our members are over 65 years
What is our tipping point?

7. Why the decrease? Aging membership Changes in membership requirements
Traditional role of diabetes societies
Members are more financially constrained
Time poor
Greater family commitments
Membership structure did not suit them
Pathway unclear

8. Is this your patient voice?

9. Or is this your patient voice?

10. Barriers to the patients voice

11. Barriers to the patients voice
Health Professionals
Giving information in a cold, tactless manner
Using medical terms unfamiliar to patients.
Pressing the patient to make a serious medical decision without adequate knowledge or time to think about it
Belittling patients who ask questions that are important to them

12. Barriers to the patient voice
Withholding information
Forgetting that health professionals deserves respect—not your worship
Pretending you understand when you really don’t
Being afraid to ask a “dumb” question. (If you are thinking about it, it’s not a dumb question.)

13. Patient organisations help people by?
providing information about living with their conditions,
raise awareness about screening and prevention, and offer a number of support tools,
they provide a forum for people to meet each other, share experiences and provide on-going support for patients, their relatives and friends
additionally, as patient organisations represent patient views on issues surrounding healthcare, they help shape the current and future healthcare environment by making their collective voices heard

14. Patient organisations fight back!?

15. What are our organisations doing for our patients relating to medicines?

16. Medicines recommended for funding but stuck on the waiting list for up to 10.75 years
10 high priority recommendations are waiting up to 6.75 years
The list grows; end of medications
Number of various types of medicines on the list as an example:
Depression 2
Hepatitis C 3
Schizophrenia 3
Arthritis 3
Cancer 12
Diabetes 6

17. Where is the patient voice?

18. Playing together debate
Funding
Patch protection
Ideological views
Working in silos
So many charities and NGOs
The list goes on……

19. Conclusion
Until we work more collaboratively and partnership we will be touching only the edges of possibilities
The patient voice is often designed and premeditated to suit our organisations purposes
Should we be a tech organisation rather than a health organisation
I would encourage all here today to be brave, challenge the paradigm and really ask if we are sincere about the patient voice