Assessment of Legal Needs for Patients and Palliative Care Providers: A Case Study in Uganda

By: Lynn Atuyambe, Elizeus Rutebemberwa, Paul Muhimbura, African Palliative Care Association (APCA)

This report focuses on the Ugandan context and explains how palliative care practice in Low Income Countries (LIC) faces many challenges and barriers. First, patients are diagnosed late and there are fewer supportive mechanisms, especially in rural areas. Care for orphans appears to pose a challenge in social and financial terms. Secondly, clinical staff (doctors and nurses) may not have the necessary training to understand or provide palliative care and end up ‘giving up’ on the patient. In addition, lack of communication skills among clinicians, institutional standards and access to palliative care centres are important barriers especially in LIC (Hospice Palliative Care Association of South Africa, 2009). Added to this are issues around legal and human rights aspects of palliative care, which are poorly understood by both patients and care providers.

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Issues: Community Paralegals, Family, Generalist Legal Services, Health Tool Type: Manuals & Guides Method: Research Languages: English Regions: > Global, Sub-Saharan Africa

Last updated January 30, 2013.

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Last updated: April 26, 2024

Our Privacy Policy

Welcome to the grassrootsjusticenetwork.org website (the “Site”) and the Grassroots Justice Network Forum (the “Forum”) operated by Namati, Inc., a Delaware corporation (“Namati”, “we”, “us” or “our”). We share your concern about the protection of your personal information online.

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When the Policy Applies

This Policy describes our privacy practices and sets out your obligations and ours with respect to your use of the Site and the Forum. This Policy applies only to the Site and the Forum and does not necessarily apply to our offline collection of information.

By using the Site and/or Forum, you agree to abide by the terms of this Policy and the terms of use (the “Terms”) and you consent to our using any information that you provide to us or that we collect, in accordance with the terms of use and the terms and conditions of this policy. If you do not agree to this policy and the terms, do not use the site.

Information We Collect and Track

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Information that We Collect

In addition to the information you submit to or through the Site, we also may collect and store data from and about you gathered in the course of your use of the Site. We call this “tracking data.”

Such tracking data may include, but is not limited to, information regarding the number and frequency of visits to the Site, the websites that you access before and after you visit the Site, the software and operating system used to access the Site and your IP address and Internet service provider.

How We Use Your Information

The information that you provide to us and that we may collect in the future is used for our legitimate interests and the purpose for which you provided it only, subject to the terms of this Policy and the Terms.

Our use of your Information involves various forms of communication with you, including:

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resetting your password and helping to keep your account secure;
contacting you in special circumstances related to your account; and
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Third Parties and Your Information

We will not disclose any personal information to third parties, except:

to parties who perform a service for us, such as sending you mail or email, web hosting, credit card processing and other similar services;
to donors who enquire about potential grantees;
when you have requested or authorized the disclosure of such information;
when we believe that such disclosure is required by law;
to enforce this Policy or the Terms;
to protect the rights, property, security or safety of Namati, Site users or the public;
to respond to an emergency; or
as otherwise stated in this Policy.

Information provided to third parties is limited to the information needed to perform their functions. We seek to limit third-party use of information and our service providers have entered into contracts with us that restrict what they can do with your personal information. If you would like specific information about our service providers who have received your information, please contact us at privacy@namati.org and we will provide that information to you.

We retain the right to transfer or assign all information pursuant to a merger, purchase or other transaction relating to Namati or our assets.

The current list of third party service providers we use include:

COOKIE NAME	PROVIDER	CATEGORY	DESCRIPTION
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wordpress_test_cookie	grassrootsjusticenetwork.org	necessary	Cookie set by WordPress to check if the cookies are enabled on the browser to provide appropriate user experience to the users
_gat	grassrootsjusticenetwork.org	analytics	Used to monitor number of Google Analytics server requests when using Google Tag Manager
lidc	linkedin.com	advertisement	Used by the social networking service, LinkedIn, for tracking the use of embedded services.
__hssrc	grassrootsjusticenetwork.org	analytics	Used to determine if a session is a new session
li_sugr	linkedin.com	analytics	Used to make a probabilistic match of a user's identity outside the Designated Countries
UserMatchHistory	linkedin.com	advertisement	These cookies are set by LinkedIn for advertising purposes, including: tracking visitors so that more relevant ads can be presented, allowing users to use the 'Apply with LinkedIn' or the 'Sign-in with LinkedIn' functions, collecting information about how visitors use the site, etc.
YSC	youtube.com	functionality	Registers a unique ID to keep statistics of what videos from YouTube the user has seen.
_ga	grassrootsjusticenetwork.org	analytics	ID used to identify users
bcookie	linkedin.com	advertisement	Used by LinkedIn to track the use of embedded services.
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IDE	doubleclick.net	advertisement	This cookie is used for targeting, analyzing and optimisation of ad campaigns in DoubleClick/Google Marketing Suite
__hs_do_not_track	grassrootsjusticenetwork.org	necessary	Prevents the tracking code from sending any information to HubSpot
__cf_bm	grassrootsjusticenetwork.org	necessary	Cloud flare's bot products identify and mitigate automated traffic to protect your site from bad bots. Cloudflare places the __cf_bm cookie on End User devices that access Customer sites that are protected by Bot Management or Bot Fight Mode. The __cf_bm cookie is necessary for the proper functioning of these bot solutions.
_gid	grassrootsjusticenetwork.org	analytics	ID used to identify users for 24 hours after last activity
hubspotutk	grassrootsjusticenetwork.org	analytics	Contains visitor's identity
__hstc	grassrootsjusticenetwork.org	analytics	Analytics tracking cookie
__cf_bm	vimeo.com	necessary	Cloud flare's bot products identify and mitigate automated traffic to protect your site from bad bots. Cloudflare places the __cf_bm cookie on End User devices that access Customer sites that are protected by Bot Management or Bot Fight Mode. The __cf_bm cookie is necessary for the proper functioning of these bot solutions.
_gcl_au	grassrootsjusticenetwork.org	advertisement	Used by Google AdSense for experimenting with advertisement efficiency across websites using their services.
bscookie	linkedin.com	advertisement	Used by LinkedIn to track the use of embedded services.
VISITOR_INFO1_LIVE	youtube.com	advertisement	Tries to estimate the users' bandwidth on pages with integrated YouTube videos.
AnalyticsSyncHistory	linkedin.com	functionality	Used to store information about the time a sync with the lms_analytics cookie took place for users in the Designated Countries
__hssc	grassrootsjusticenetwork.org	analytics	Analytics session cookie
vuid	vimeo.com	analytics	This first party cookie created by Vimeo is used to assign a Vimeo Analytics unique id.
__hs_cookie_cat_pref	grassrootsjusticenetwork.org	necessary	The HubSpot Cookie Banner's consent preferences cookie.
ar_debug	google-analytics.com
VISITOR_PRIVACY_METADATA	youtube.com
NID	google.com	necessary	This cookies is used to collect website statistics and track conversion rates and Google ad personalisation
cf_clearance	vimeo.com
__cf_bm	hsforms.com	necessary	Cloud flare's bot products identify and mitigate automated traffic to protect your site from bad bots. Cloudflare places the __cf_bm cookie on End User devices that access Customer sites that are protected by Bot Management or Bot Fight Mode. The __cf_bm cookie is necessary for the proper functioning of these bot solutions.
JSESSIONID	nr-data.net	functionality	JSESSIONID is a platform session cookie and is used by sites with JavaServer Pages (JSP). The cookie is used to maintain an anonymous user session by the server.
_cfuvid	vimeo.com	necessary	This cookie is used to apply rate limits to traffic. It allows the Cloudflare WAF to distinguish individual users who share the same IP address.

How Long Your Information is Stored

Personal information you submit via your member account, other than information provided or content posted by you to public areas of the Site as described below, is deleted from Namati’s records following the deletion of your account. However, such information may continue to be retained by third-party service providers to which it has been disclosed for one of the reasons listed above. Any financial records will be kept in accordance with Namati’s data retention policy.

Where Your Information is Stored

Your Information is stored on Digital Ocean servers in New York, USA. When you provide personal information to us, we request your consent to transfer that personal information to the USA. The USA does not have an adequacy decision from the European Commission, which means that the Commission has not determined that the laws of the USA provide adequate protection for personal information. Although the laws of the USA do not provide legal protection that is equivalent to the EU GDPR, we safeguard your personal information by treating it in accordance with this Policy. We take appropriate steps to protect your privacy and implement reasonable security measures to protect your personal information in storage. We use secure transmission methods to collect personal data through our website. We also enter into contracts with our data processors that require them to treat personal information in a manner that is consistent with this Policy.

How Your Information is Protected

We have put in place appropriate security measures to prevent your personal data from being accidentally lost, used or accessed in an unauthorized way, altered or disclosed. In addition, we limit access to your personal data to those employees, agents, contractors and other third parties who have a business need to know. They will only process your personal data on our instructions and they are subject to a duty of confidentiality.

We have put in place procedures to deal with any suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so.

You should be aware that any information provided or content posted by you to public areas of the Site, including but not limited to interactions on the Site and information posted to the Member Directory (via your profile), the Resource Library, and the Forum, may be read, collected or used by other visitors of the Site, who may not need to log in as a member to view the information. Namati is not responsible for the third-party use of any information provided in such manner. By participating in the use of the Site’s interactive features, you consent to Namati’s use or disclosure of any content that you submit. For more information on posting content, please see our Terms.

Automated Decisions Based on Your Information

The Forum uses data about your posts and other activity to make automated decisions about whether your posts are spam.

The Forum may also use data about your posts and activity to award you badges and calculate a trust level for your account. Your trust level may affect how you can participate in the Forum, such as whether you can upload images, as well as give you access to moderation and management powers in the Forum. Your trust level therefore reflects Forum administrators’ confidence in you, and their willingness to delegate community management functions, like moderation.

Other Communications

From time to time, we may email users of the Site information regarding important developments affecting Namati. We may also email users on occasion regarding the Site. Such emails may be sent to users of the Site if they have given their consent previously or if they have requested information from us or acquired goods or services from us in the past and have not opted out of receiving marketing communications. You can ask us to stop sending you marketing messages at any time by (i) logging into the website and checking or unchecking relevant boxes to adjust your marketing preferences; or (ii) by following the opt-out links on any marketing message sent to you; or (iii) by contacting us at any time.You may choose to unsubscribe from future emails by using the unsubscribe link included in all mass email correspondence from Namati.

Referrals

If a user elects to use our referral service to inform a friend about the Site and Forum, we request the name and email address of the friend. Namati will automatically send the friend a one-time email inviting the friend to visit the Site. Namati stores this information for the sole purpose of sending this one-time email, and, while a third-party mail service provider may retain the information in its database, no additional emails will be sent by Namati without further action by the friend.

Links to Third-Party Websites

The Site and the Forum may contain links to websites owned and operated by other parties. We are not responsible for and have no control over the privacy policies of those sites. We encourage you to review the privacy policies and terms of use of those sites prior to providing them with any information.

Cookies

Namati uses cookies. Cookies are small pieces of information that a website transfers to your computer’s hard drive for record-keeping purposes and may have unique identifiers and transmit information about you and how you use the Site. Such information may include your search preferences, your browser type and the date and time of use. If you choose, you can disable some (but not all) Cookies in your device or browser settings, but doing so may affect your ability to use the Site.

Namati does permit several non-advertising third parties to set third-party cookies in order to enhance Site functionality. These third parties may include, but are not limited to: Facebook, Google, and Vimeo. For more information on the cookies that these third parties set, users are encouraged to consult the privacy policies and terms of use of these third parties.

Children

Namati is concerned about the privacy protection of children who access the Internet and this website is not intended for children and we do not knowingly collect data relating to children. Accordingly, the Site and Forum are not intended for use by anyone under the age of 16, and we do not knowingly collect information from anyone under 16 years of age without the consent of a parent or guardian.

Compliance with Laws

We reserve the right to disclose any information to comply with any law, regulation, decree, judgment, order, subpoena or any other governmental order (“Order”) without any obligation to contest or verify the accuracy of such Order.

Applicable Laws

This Policy will be governed by and construed in accordance with the laws of the State of New York, without regard to any principles of conflicts of law. You agree that any action at law or in equity that arises out of or relates to any use of the Site may be filed:

if you reside in the EEA, in the courts of the EEA Member State in which you are a resident
if you reside in the United Kingdom, in the courts of the United Kingdom

The section titles in this Policy are for convenience only and have no legal or contractual effect. The Site, the Forum, and any third-party services they use, may be subject to additional terms and conditions regarding privacy and use of information. Your use of the Site and the Forum is subject to those terms and conditions, which are incorporated into this Policy by reference. In the event of an inconsistency between this Policy and any additional posted conditions, the provisions of the additional conditions shall control.

Changes to the Policy

We may need to change the Policy from time to time in order to address new issues and to reflect changes on the Site or in the law. We reserve the right to revise or make any changes to the Policy, and your continued use of the Site subsequent to any changes to this Policy will mean that you agree to and accept such changes. You can tell if the Policy has been updated by checking the last revised date posted on the top of this page. Historic versions can be obtained by contacting us at privacy@namati.org

Your Rights Under the Policy

You can access, remove, update or correct your information in your Site profile (https://grassrootsjusticenetwork.org/connect/member/YOUR USERNAME HERE/?edit=1) and your Forum profile (https://connect.grassrootsjustice.network/u/YOUR USERNAME HERE/preferences/account).

You can also access, remove, update or correct your information, and raise any questions or concerns regarding the Site or the Policy, by emailing privacy@namati.org, or mailing:

Namati Data Protection Officer 1616 P Street NW, Suite 101 Washington, DC 20036, USA

It is important that the personal data we hold about you is accurate and current. Please keep us informed if your personal data changes during your relationship with us.

Your Legal Rights

You have the right to:

Request access to your personal data (commonly known as a “data subject access request”). This enables you to receive a copy of the personal data we hold about you and to check that we are lawfully processing it.

Request correction of the personal data that we hold about you. This enables you to have any incomplete or inaccurate data we hold about you corrected, though we may need to verify the accuracy of the new data you provide to us.

Request erasure of your personal data. This enables you to ask us to delete or remove personal data where there is no good reason for us continuing to process it. You also have the right to ask us to delete or remove your personal data where you have successfully exercised your right to object to processing (see below), where we may have processed your information unlawfully or where we are required to erase your personal data to comply with local law. Note, however, that we may not always be able to comply with your request of erasure for specific legal reasons which will be notified to you, if applicable, at the time of your request.

Object to processing of your personal data where we are relying on a legitimate interest (or those of a third party) and there is something about your particular situation which makes you want to object to processing on this ground as you feel it has an impact on your fundamental rights and freedoms. You also have the right to object where we are processing your personal data for direct marketing purposes. In some cases, we may demonstrate that we have compelling legitimate grounds to process your information which override your rights and freedoms.

Request restriction of processing of your personal data. This enables you to ask us to suspend the processing of your personal data in the following scenarios:

If you want us to establish the data’s accuracy.
Where our use of the data is unlawful but you do not want us to erase it.
Where you need us to hold the data even if we no longer require it as you need it to establish, exercise or defend legal claims.
You have objected to our use of your data but we need to verify whether we have overriding legitimate grounds to use it.

Request the transfer of your personal data to you or to a third party. We will provide to you, or a third party you have chosen, your personal data in a structured, commonly used, machine-readable format. Note that this right only applies to automated information which you initially provided consent for us to use or where we used the information to perform a contract with you.

Withdraw consent at any time where we are relying on consent to process your personal data. However, this will not affect the lawfulness of any processing carried out before you withdraw your consent. If you withdraw your consent, we may not be able to provide certain products or services to you. We will advise you if this is the case at the time you withdraw your consent.

No fee usually required

You will not have to pay a fee to access your personal data (or to exercise any of the other rights). However, we may charge a reasonable fee if your request is clearly unfounded, repetitive or excessive. Alternatively, we could refuse to comply with your request in these circumstances.

What we may need from you

We may need to request specific information from you to help us confirm your identity and ensure your right to access your personal data (or to exercise any of your other rights). This is a security measure to ensure that personal data is not disclosed to any person who has no right to receive it. We may also contact you to ask you for further information in relation to your request to speed up our response.

Time limit to respond

We try to respond to all legitimate requests within one month. Occasionally it could take us longer than a month if your request is particularly complex or you have made a number of requests. In this case, we will notify you and keep you updated.
If you live in an EEA Member State, all of which have adopted the EU GDPR and national , you have a right to lodge a complaint with your relevant supervisory authority about this policy and its application. The European Commission has a list of EU national data protection authorities here:
http://ec.europa.eu/justice/article-29/structure/dataprotectionauthorities/index_en.htm

If you live in the United Kingdom, you have a right to lodge a complaint with your relevant supervisory authority, the ICO, about this policy and its application:
https://ico.org.uk/make-a-complaint/