Led by RPAs, the Masterclasses are a series of short sessions that tackle the big issues facing advocacy leaders. In this Empowering Advocacy Leadership masterclass, RPAs covered handling personal data effectively and safely, and becoming a better advocate.
First to speak was Jørn Schultz-Boysen. With his commercial background in data and IT, Jørn was well-placed to give attendees some simple tips and advice on managing data securely.
‘Protecting data is everyone’s responsibility. For MOs, it’s about safeguarding the trust between you and your members.’
Jørn reminded everyone that data breaches can have devastating effects, financial costs and lead to potential loss of trust from the community.
Trust only sources you know
Email and internet fraud are things most people will encounter in everyday life; they are also the most common sources of data breaches. Trust was the most important thing, he reminded the audience. ‘Phishing’ attempts were, Jørn said, not the fun kind where you catch a fish. Red flags include unexpected requests for sensitive data or a sense of urgency. Offers that appear too good to be true usually are.
Jørn’s simple advice was, ‘Be very careful about who you give your personal data to. Never hand out login details. Buy only from a provider you know and trust. Trust only sources that you know.’
Jørn was very clear on the importance of passwords. His top tips are:
- Use strong passwords; Unique combinations of letters, numbers, and symbols constitute a strong password
- Whenever possible, enable 2-factor authentication (where you are sent a unique code to input)
- Avoid recycling passwords. ‘This is the only time that recycling is bad,’ Jørn joked.
Regular software updates protect your data from vulnerabilities that hackers may exploit.
Jørn’s other top tips for data security were:
- Never give out your login details
- Always lock your devices when you’re not using them
- If something seems suspicious in an email (link or attachment) or on a website, don’t click
- Use a VPN whenever you use a public Wi-Fi connection
- Consider an incident response plan (this details what to do if something bad happens, so you recover quickly and effectively)
- Don’t ask for more data than you need.
‘The more data you have, the more you can lose.’
Jørn Schultz Boysen, RPA
It’s everyone’s responsibility to be proactive about IT Security. Jørn encouraged all MOs to consider using the free HAEi tools, which have the highest standards of data security built in.
HAEi FocalPoint is a one-stop tool for MOs. It provides a single point to login to any HAEi tools, and a single place to capture all the core information related to running an advocacy organization, such as treating hospitals, physicians, and available treatments. Inputting into HAEi FocalPoint means that any changes are automatically updated across an HAEi-supported website and communicated directly to your RPA. The tool also acts as a way to handle travel grant applications.
HAEi Connect, was introduced by Fiona Wardman. She asked for a show of hands from the audience: ‘Who was currently using a Word file, Excel spreadsheet or even paper records with members’ details?’ Thanking everyone for their honesty, she made clear that when people have trusted you with their personal data, those forms of record keeping just weren’t secure enough. HAEi Connect is a free and secure database tool exclusively for HAEi MOs. It is GDPR compliant, which is the highest level of protection of privacy and security.
‘I want to know that my information is secure, that my privacy is protected so that no hackers can access my personal data.’
Fiona gave the audience a whistle-stop tour of HAEi Connect. She started with the dashboard, which shows a quick overview of member data, and any outstanding data updates needed, whether from patients or physicians, media or pharmaceutical contacts.
Data is at its most valuable when it can be used effectively. Fiona outlined examples such as collecting a cohort of patients for a forthcoming clinical trial or contacting only specific patients affected by a medication shortage. HAEi Connect means you can search and select the right people to contact every time, whether through emails or text messages; whatever works best in your country.
Fiona highlighted testimonials from HAE Brazil and HAE Peru; both of them felt that it helped them to keep patient data secure and offered a user-friendly tool for communicating with members and with HAEi.
An Advocacy Academy
Moving away from data, Michal Rutkowski returned to the stage to discuss the importance of continuing education for advocates, and to showcase the value of HAEi Advocacy Academy. He described it as a powerful, free-to-use online learning platform, designed to support people with HAE in everyday life, and help those in MOs to get the most from their advocacy efforts. Whether you are just starting out or an experienced advocate, there is something for you at HAEi Advocacy Academy.
HAEi Advocacy Academy offers learning in small, manageable chunks, which can be accessed anytime, anywhere in the world. ‘All you need is internet access,’ Michal quipped.
‘HAEi Advocacy Academy lets you learn new skills in your own time and at your own pace.’
The available courses are split between Open Access and MO Exclusive Access. The first type of course is available to all; you just need to create a free account to get started. For MO Exclusive Access, contact your RPA, who will share your specific code to get you started.
The Open Access courses focus on HAEi resources, good-to-know tips, a workshop, and a youngsters’ toolkit. The MO Exclusive Access courses go deeper, with learning and skills about advocacy, running an MO, and using HAEi resources.
Michal concluded by sharing that HAEi Advocacy Academy had helped him become a better leader in HAE Poland and offer better help and support to patients in his home country.