Šarūnas Narbutas: Why Patient Organisations Need to Be Trustworhy

Why Patient Organisations

Need to Be Trustworthy

Šarūnas Narbutas

President

Lithuanian Cancer Patient Coalition

Lithuanian Cancer Patient Coalition

(POLA)

• POLA is an NGO and national umbrella uniting:

– Cancer Patient Organisations AND

– Other NGOs working in cancer field

• Was established in 2012. As of 2015 POLA has 20 full member organisations

• POLA is transparent and independent organisation, representing views of cancer

patients in policy making.

• POLA mission is to make every effort to improve quality of life for cancer patients

and their relatives.

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POLA Structure and Activities

• Board currently consists of 7

individuals:

– 3 cancer patients

– 2 cancer patient caregivers

– 1 oncopsychologist

– 1 palliative care professor

• Daily operations managed by:

– Director

– 4 project managers

– 2 volunteer coordinators

– 12 volunteers

• Website: www.pola.lt

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• Political activities

– Participation in governmental

committees / working groups

– Providing competent authorities with

action plans (rather than the list of

problems)

– Campaigning for individual patients‘

access to treatment

• Educational projects

– Information materials to patients

and caregivers

– Awareness raising

– POLA social card project

Šarūnas Narbutas, POLA

POLA Team

2017-01-21 Šarūnas Narbutas, POLA 4

Why Patient Organisations should Be

Concerned about their Credibility

• PO have a mandate to leverage patient‘s voice to bring visibility to gaps in

cancer control

• Patient representatives provide a human face to data and statistics =

convincing argument about what is working well / need to be improved in

the health care system

• Trusted (recognised) patients → spotlight → impactful message at the

top (politicians / media)

• Democratic tool to advocate for change in:

21/01/2017 Šarūnas Narbutas, POLA 5

– Attitudes

– Knowledge

– Practice

– Services

– Policy

– System

Framework Activities


Educating healthcare

professionals

Improving access to

healthcare / treatment

Raising awareness of

healthcare issues

Representing patients‘

view in policymaking

Providing information to

patients / public

Contributing to clinical

guidelines

Providing patient

support

Facilitating networking

between patient groups

Risk Factors

• Lack of Funding for PO

– Lack of PO recognition in corporate sector

– Very limited or no funding from municipalities

– Limited funding from EU projects

• Lack of institutional training for patient advocates

• Lack of strategic documents regarding interaction with PO

• Common challenges:

– PO (associations) compete for the same funding with all NGOs (e.g.

foundations, public enterprises)

– PO receive majority of funds from pharmaceutical companies



Proportion of Access to Certain Groups

Politicians

Media

General Public

Healthcare professionals

Newly diagnosed patients

Question 1

• In your country do the majority of newly diagnosed patients trust

patient organisations in their disease areas?

• Answers:

(A) Yes, completely

(B) Yes, somewhat

(C) No, because they are not aware about the activities of such

patient organisations

(D) No, because they do not think such patient organisations are

trustworthy

(E) I am not in position to answer this question


Question 2

• In your country do the majority of healthcare professionals

(doctors, nurses) trust patient organisations in their disease

areas?

• Answers:

(A) Yes, completely

(B) Yes, somewhat

(C) No, because they are not aware about the activities of such

patient organisations

(D) No, because they do not think such patient organisations are

trustworthy



Question 3

• In your country does the general public trust patient

organisations?

• Answers:

(A) Yes, completely

(B) Yes, somewhat

(C) No, because they are not aware about the activities of patient

organisations

(D) No, because they do not think patient organisations are

trustworthy



Question 4

• In your country does the media trust patient organisations?

• Answers:

(A) Yes, completely

(B) Yes, somewhat


organisations


trustworthy



Question 5

• In your country do the majority of the politicians trust patient

organisations?

• Answers:

(A) Yes, completely

(B) Yes, somewhat


organisations


trustworthy




Patients

CommunityPolicy makers

Researchers

Industry

Healthcare

Professionals

Bridging The Partnerships

Media

How Do We Define Patient Organisations

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Find at: http://www.ema.europa.eu/docs/en_GB/document_library/Regulatory_and_procedural_guideline/2009/12/WC500018099.pdf

Šarūnas Narbutas, POLA

Patient Organisations

as Defined by EMA


Criteria to be Fulfilled


Question 6

• How many of the following elements are fulfilled in your

organisation?

– Board consists of majority of cancer patients or their relatives

– Activity reports are available online

– Financial reports are available online

– Membership can provide an input to public statements made

by an organisation

(A) 4

(B) 3

(C) 2

(D) 1

(E) 0


How to Address Trust Issue

• Governments can do better

– Allocating funding for PO projects

– Including PO in decision making processes

– Becoming more sensitive to social vs corporate issues

• Industry can do better

– Advocating against marketing related interactions with patient organisations

– Helping PO to become sustainable through the lens of social corporate

responsibility vs funding based on corporate goals

• Patient organisations must do better

– Be transparent (publish financial and activity statements online)

– Diversify funding (do not receive majority of income from governmental or

corporate funding sources)

– Be credible (patient‘s interests must always be at the core of every public

statement and behind every project)


Thank You!

20

Šarūnas Narbutas

[email protected]

+370 652 22852

www.pola.lt

2017-01-21 Šarūnas Narbutas, POLA

Šarūnas Narbutas: Why Patient Organisations Need to Be Trustworhy

Healthcare

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