Table 4.
Topics of relationships with pharmaceutical companies covered by policies on websites of 26 patient groups
| Particular topic of relationship covered by policy | Number of groups with policy mentioning topic | Policy positive about topic | Policy not positive about topic |
| Composition and authority of board | |||
| Current or previous employment of board members should be made public | 0 | 0 | 0 |
| Board membership allowed for people who currently or previously worked for a donor | 3 | 2 | 1 |
| Acceptance of donations and revenue generation | |||
| Source of donations should be made public | 6 | 6 | 0 |
| Amount of donations should be made public | 0 | 0 | 0 |
| Purpose of donations should be made public | 0 | 0 | 0 |
| Donations can be tied to donor-initiated project | 10 | 5 | 5 |
| Donations require approval by board or executive director | 11 | 5 | 6 |
| Independence of decision-making | |||
| Group has total independence in decision-making | 13 | 13 | 0 |
| Donors allowed to directly organise seminars, lectures, projects or meetings | 2 | 1 | 1 |
| Endorsements | |||
| Names of donors and/or their logos can be displayed on group’s website except to identify donor and amount of money donated | 8 | 4 | 4 |
| Endorsements of products and/or companies allowed | 14 | 3 | 11 |
| Hyperlinks to donors’ websites allowed | 4 | 4 | 0 |
| Patient group can directly or indirectly cooperate with companies in lobbying, testifying, addressing legislators, regulators, or policymakers, writing articles or policy briefs, etc | 7 | 4 | 3 |
| Material assistance to patient group members by a donor | |||
| Donor allowed to directly pay for conference travel and accommodation for group representatives and participants | 1 | 1 | 0 |
| Donor allowed to directly pay staff salary or provide staff support for group | 2 | 1 | 1 |
| Other interactions between patient members of group and donor | |||
| Donor allowed to provide information to patient members of group about products donor makes | 4 | 2 | 2 |
| Donor allowed to access membership data or membership lists | 2 | 1 | 1 |
| Donor allowed to provide patient group members with advocacy materials | 3 | 1 | 2 |
| Donor allowed to provide gifts of non-educational value to patient group members | 1 | 0 | 1 |
| Donor allowed to provide information to patient group members about policies or positions adopted or suggested by the donor | 1 | 0 | 1 |
| Independent monitoring of activities and compliance with policies | |||
| Monitoring of compliance with group’s policies | 3 | 0 | 3 |
| Actions if group is not compliant with its policies | 2 | 1 | 1 |
| Audit of what activities donor money has been spent on | 2 | 1 | 1 |
| Public availability of results of audits, monitoring, compliance | 2 | 0 | 2 |