What do patient communities need in order to self-organize?

Governance is key to taking back our power.

Governance of any organization, including an individual support group, determines who has power, who makes decisions, how players make their voices heard and how to ensure accountability.

Many support groups online are in different stages of getting organized.  Some form legal organizations, and others do not. 

To engage in collective self-governance, a group needs to have processes, structures, traditions and rules in place so it can:

  • determine who is a member of the group
  • decide who has power, and over what
  • ensure that power is exercised properly
  • make and enforce decisions
  • hold decision-makers accountable
  • negotiate with others regarding their rights and interests
  • establish the most effective and legitimate arrangements for getting those things done

There are a thousand reasons why governance is important to online peer support groups.  Here are the top 3.

1

Privacy

Peer support group members need to know and understand how a group's privacy is being effectively managed.
2

Trust

When sharing sensitive information, group members need to trust that information in the group will not be used against them.
3

Fairness

Peer support group members need to know that group members will be treated with fairness and honesty.

The Evidence + Advanced Reading

1.  Principles of effective governance for sustainable development

This report was created by the UN to articulate a set of eight principles of good governance, which The Light Collective has adopted and slightly modified for our the unique needs of online health communities.

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2.  Lawless:  The Secret Rules that Govern Our Digital Lives

Lawless is about the power that technology companies have over our lives and how we can develop a new constitutionalism to better protect our rights. Social media platforms, search engines, and other technology companies influence what we can see and say online. These giant companies govern our behavior online without real accountability, and they are at the center of fierce battles between governments, lobby groups, the media, and grassroots campaigns from activists.

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3.  Elinor Ostrom’s 8 Principles for governing shared resources

Elinor Ostrom won a nobel prize in economics for her work on to study how to manage resources that are considered by a community.  While Ostrom’s work looked at natural resources and farming, the principles she developed uniquely apply to shared data resources and knowledge generated by support groups online.

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The Light Collective has drafted a set of principles for governance of health support groups on the internet.

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