Online Communities Officer

Our client is looking for a new role, (subject to 5 years funding) to set up and manage an online community for their genetic disorder patients. The anticipated project start date is Monday 3 September.

Set up in 2003 by a patient, our client has a small office in Cambridge, where this position will be based alongside the rest of the team.

Key Activities

The Online Community Manager will:
1. Develop the online community system:
- In consultation with stakeholders, develop a plan and strategy for the online community.
- Identify the best software and platform.
- Work with the developers to set up and implement the best possible virtual community and online registry as a bespoke and secure system.
- Test the online community and registry with the help of our beneficiaries.
- Launch and manage the online community successfully.
- Ensure the online community integrates with our existing website, social media and blog.
- Promote the online community system, recruiting patients online and marketing it.
- Provide advice to other rare disease patient groups who are interested in a similar system.
- Organise the email campaign to GPs.

2. Ensure patient involvement in the online community project:
- Carry out an in-depth assessment with patients, relatives and doctors.
- Train beneficiaries to use the online community.
- Provide online help and support for using the community.
- Facilitate the use of the online community: sifting through discussions in the community to make sure that people are getting answers to questions; helping to make sure that the right people are being engaged in discussions and their views and opinions are captured.
- Ensure return of lapsed readers through the judicious use of regular system emails and producing a regular community newsletters and editorial.

3. Ensure security and equal opportunities of the online community:
- Ensure that the software and platforms adhere to data protection, equal opportunities and security standards as required by law and best practice.
- Moderate the community to ensure standards of decency and against spam.
- Respond within 24 hours to any complaints after having investigated them.

4. Develop online information packs:
- Develop content for patient and doctor information packs.
- Implement and promote these information packs and e-learning.
- Develop the clinical trial information module.

5. Monitoring and evaluation and administration:
- Set up online monitoring and evaluation systems using online surveys, webinars, Google Analytics and other software.
- Monitor effective benchmarks for measuring the growth of the community, and analyze, review, and report on effectiveness of new initiatives.
- Monitor trends in online community tools, trends and applications.
- Report back periodically to the Project Board on MandE.
- Oversee the budget management and administration of the project.
- Help commission the independent evaluator.

Person Specification - qualifications/knowledge/experience

Essential
? IT and internet skills, particularly use of databases, registries and web/design software
? Social media skills
? Training skills
? Online interpersonal skills
? Project management skills
? Experience of commissioning web based services.
? Knowledge and understanding of online community platforms and their respective participants (Forums, Blogs, Photo Uploads, Profiling etc) and how they can be deployed in different scenarios
? Team skills
? Online editorial, marketing and customer service skills
? Administration and budgeting skills

Desirable
? Experience of setting up patient registries and databases
? Understanding/experience of charity work
? IT degree
? An interest in rare diseases and/or patient groups

Our client will support individuals who are able to show strong essential skills and passion to develop the desirable skills.