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How to Work With Others

Networking is one of the biggest aspects of patient advocacy. People or organisations that share your vision can support your projects and in return, you can support theirs. This mutual support is often more than a single act of kindness, if you speak at someone’s conference, you will gain visibility and you can advertise it to build credibility and recognition in your field. Networking allows for connections with non-patient stakeholders such as health care providers (HCP), academics, regulatory agencies, and representatives from political institutions, or pharmaceutical companies. Currently, it appears that most actors in the health sector connect on the social media platforms Twitter, Facebook and LinkedIn. We highly recommend you engage in these platforms.

Working with patient and umbrella organisations

Patient organisations are more powerful when they collaborate together under umbrella organisations, like INCA. Patient organisations like yourselves can take advantage and stay in active contact with INCA to collaborate and participate in INCA’s projects, events, and discussions. This collaboration can help move neuroendocrine cancer advocacy forward and put neuroendocrine cancers on the agenda of relevant stakeholders.

In addition, it is also possible for you to engage with more general umbrella patient organisations. This could include for example Rare Disease International (RDI). However, when contacting international organisations, it is smart to establish contact through INCA.

Nevertheless, collaborating with patient organisations from similar disease areas that are not umbrella organisations can also be very beneficial to your organisation to broaden the  scope of work and the opportunities.

Working with governmental organisations and people

Working with the government includes individual people and representatives from governmental institutions such as the health department, HTA agencies, and regulatory bodies. You can also work with representatives from opposition parties. You can interact with governmental representatives on every level. If you do not have much experience, it may be easier to start with your local governmental official.

TIPS on how to work with politicians

  • Most importantly, be brief when approaching a politician. They are always busy and often need to make decisions fast. Independent of if you approach them by email, on the phone, or in person, prepare how to bring your point across concisely and briefly.
  • Practicing an elevator pitch for your organisation and your goals can be very helpful.
  • Be clear. Interactions should describe the problem in an understandable manner and provide a call for action. These are the recommendations that you want them to implement.
  • Address them personally. Especially, if you are writing an email, address people by their name. Even if you are reaching out to multiple politicians, you are more likely to receive responses if you address people personally, as they receive many emails.
  • You should be informed about the people you reach out to. Maybe you can link your work to their past experiences. For example: “We were delighted to hear your speech on the importance of fighting cancer at the parliament…”
  • Assistants are very important. Most politicians have assistants that arrange their meetings, answer emails, and generally are their right hand. Being in contact with an assistant will improve your chances of working with the politician.
  • Stay informed on health policy. It can help you to know, for example current issues that are currently debated, what initiatives your organisation can be involved in, patient consultations, or general changes in policy. Understanding the main institutions and an overview of current health legislation can be a great start. Further, you can subscribe to newsletters of policy-makers, (patient) organisations, interest groups, and governing bodies such as HTA agencies, regulatory bodies, and the parliament to stay up to date. You can also follow relevant people on social media.
  • Governmental bodies may provide funding for different projects. See if your government has a call for proposals that fits your goals.

Working with medical and professional societies

Medical societies are organisations that consist of researchers and medical professionals who focus on specific disease areas.

They may have a variety of goals. Here is a list:

  • Inform and educate on new research in the field;
  • Conduct research in the field;
  • Scientific collaboration;
  • Raising awareness among other professionals and patients;
  • Medical guidelines;
  • A broad network of HCP to enable exchange and collaboration.

Medical societies can spread the information through conferences, newsletters, emails, websites and they can be valuable allies to patient organisations. Medical societies can be a partner for projects on educating health care providers. The European Neuroendocrine Tumor Society provides credits for medical students that participate in their events.  As medical societies often share the same aim as patient organisations, working together can demonstrate a united front to address neuroendocrine cancer issues.

View a list of professional societies in NETs

INCA EXAMPLE: CASE STUDY FROM NEUROENDOCRINE CANCER UK

Neuroendocrine Cancer UK created a course for nurses (and other HCPs) to provide evidence-based information on neuroendocrine cancers including diagnosis, treatment, and management. Neuroendocrine Cancer UK has worked with the Royal College of Nurses and received CPD (Continuing Professional Development) accreditation. Furthermore, Neuroendocrine Cancer UK was able to create a network of medical societies, as well as national and supranational patient organisations that share their goals and are relevant to neuroendocrine cancers.

Find more information here

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