1. The role of patient activism
Glenn Laverack

2. Activism
Activism is action on behalf of a cause, action that goes beyond what is conventional or routine. It involves a challenge to the existing order whenever it is perceived to influence peoples’ health negatively or has led to an injustice or an inequality (Martin, 2007).
Activism therefore depends on what is considered ‘conventional’ in society - as any action is relative to others.

3. The role of patient activism
To mobilize patients to have more control over self-care and health care service delivery.
To take action to challenge health care delivery and policy when they influence the patient negatively or lead to an inequality.
To take action to challenge societal norms when they influence the patient negatively or lead to an injustice.

4. Patient activism and empowerment
The predominant view of patient activism is patient empowerment that helps individuals to gain more control over self-care.
Empowerment is a process by which people increase control over the events that influence their lives and health (David Werner, 1988).
The goal is to enable patients to have more of an influence about the health care that they receive and towards which they are expected to contribute.

5. Individual self-care and empowerment
One study in New Zealand showed that an empowered home-based group of patients had significantly better attendance at clinic appointments and a better physical therapy completion rate for ankle sprains.

6. Patients were helped to set goals and to develop personal action plans to complete their therapy as well as education and training on treatment such as strapping techniques.
The patients had more control and were better informed about their recovery and this led to a viable home-based option for patient self-care(Bassett and Prapavessis, 2007).

7. Patient empowerment is about respecting patients' rights, giving them a ‘voice’ so that they can participate in making health systems more user-friendly and health information more accessible.
It involves both individual control and broader collective action.
Patients must be given the ability to take action on their own behalf and on the behalf of others, for example, if their health care does not meet their needs and expectations.

8. The Continuum of Empowerment
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(Laverack, 2004)
Action for social and political change
Small groups
Community organisations
Partnerships
Personal action 8

9. Health Care Consumer groups
Patient advocacy groups
Patient involvement action groups
Social movements

10. Activist tactics Advocacy Legal action Lobbying Publicity stunts
Indirect
Direct
Advocacy
Lobbying
Petitioning
Consumer boycotting
Protests and demonstrations
Legal action
Publicity stunts
Strike action
Property damage such as graffiti

11. What works in patient activism
1 Patient Involvement Action Groups
2 The fight for access to Herceptin
3 Altogether better
4 Patient networks and mental health

12. Patient Involvement Action Groups
Patient Involvement Action Groups (PIAGs) involve patients acting on behalf of themselves or on behalf of others to support a cause and to influence the outcome of decisions.
There is an important distinction to be made between:
PIAGs that are independent and are formed by patients, for the benefit of its members. Patient Concern (UK) operates a network in collaboration with other groups run by patients on issues that matter to them. These include protection for whistle-blowers, assisted suicide, campaigns against the reduction of hospital beds and strengthening complaints procedures.
PIAGs that are supported by a health service provider.

13. A UK hospital allowed patient concerns to be raised anonymously and to have feedback about actions taken. Each ward was asked to nominate 1 representative to be available to attend management meetings.
Once a month the comments raised were reviewed by the group and action was decided upon at an appropriate level.
The results of each action were posted on display boards in the hospital to inform the patients.

14. The shared gains
Side rooms for infection control to have curtains fitted to act as a screen for more privacy.
Wards which suffered from solar glare received vertical blinds.
Shelves were put up in bathrooms to help patients to manage their own care.
The number of formal complaints decreased to less than 20% of the previous level as patients gained confidence that their comments would be acted upon and that the hospital environment had improved (Improvement Network, 2011).

15. What works in patient activism
Frame the strategy and tactics around a single, simple issue and a clear policy solution.
Frame the issue to gain supportive public and professional opinion for your cause.
Use the mass media to shift public opinion followed up with a professional and public debate about the key issues.
Peaceful civil protests help to gain media attention and to re-frame the debate.

16. The fight for access to Herceptin®
About 1 in 5 women with breast cancer have tumours that are sensitive to treatment using Herceptin®.
Women’s groups campaigned for NHS Trusts in the UK to fund the use of Herceptin® more widely.
The minimum cost to pay for the treatment was well beyond the means of most women with breast cancer.
The Trusts refused to fund the drug and preferred to wait, for safety concerns, for a decision from the National Institute of Health and Clinical Excellence.
This outraged many women.

17. NICE was then put under pressure to make a quick decision.
The women took actions such as sit-ins outside hospitals and petitions to their MPs.
NICE was then put under pressure to make a quick decision.
Eventually, the success of a high profile court case ensured that Herceptin® was approved for use on the NHS.
(Boseley 2006)

18. What works in patient activism
5 Legal action has been one of the most effective means of achieving policy change.
6 Create an alliance with influential others who can act as ‘champions’ for your cause.
7 Networks to bring people together to share ideas either through a physical meeting or using social media.

19. Working with citizens, patients and services to improve health
17,000 + health champions (many patients).
Roles varied from talking to people as part of their daily lives to organising community activities.
Helped to recruit other volunteers.
Aimed to influence policy and practice. (

20. Patient networks
The ability of patients to empower themselves is in part dependent on their ability to build and maintain networks.
A network is a structure of relationships, both personal and professional, through which individuals maintain and receive support, resources, services and information for the improvement of their health and wellbeing (Wright, 1997).

21. Mental health activism
Mad Pride is a social movement and international network of mental health service users who identify themselves as being survivors, consumers and patients or ex-patients.
The movement started in the 1990s in response to local community prejudices towards people with a psychiatric history.
The aim is to re-educate the public on the causes of mental disorders and the experiences of those using the mental health system such as the use of force in psychiatric hospitals and patient suicide.

22. Mad pride raises public consciousness about human rights through actions such as art, street theatre, music, poetry and protests.
Protests have been organized in England, Australia, France, South Africa and the USA.

23. What works in patient activism
The strength of patient activism lies in assets such as:
Strong leadership
An evidence-backed position
Good understanding of how to use media
A network of strategic alliances
Sufficient, independent financial resources
The use of multiple and innovative tactics

24. Innovative e-tactics
The patient is a consumer: Advisory websites for information between patients about drugs and services.
Security apps and assistive products for patients: door locks, alarms, wheel chairs, hand rails, pressure relief products, hearing aids, walking sticks.
The patient has carer needs: Websites to support the sharing of carer services within a community, for example, an exchange of time and voluntary services.
An online market place for specialist services: massage, spiritual and social support.

25. What can we do as professionals?
We can use our individual ‘expert’ power to legitimize a cause.
Help to provide an evidence base.
Directly or indirectly fund activities.
Build networks and partnerships.
In our capacity as professional associations we can collectively support a cause.

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