How companies can contact patients & patient organizations in a compliant & mutually beneficial way

After evaluating and identifying the right patient representatives and assessing the regulatory framework conditions some companies may still struggle with a question that may sound simple but can be really tricky when it comes to acting.
Two woman talking to each other

Typical traps that should be avoided

Confusion occurs from some worst-case examples, negative experiences, and the fear of reinforcing a bad image of pharmaceutical companies.

Typical traps could be:

  • The communication is “weird” and therefore overwhelming and discouraging to patients.
  • The documents for data protection and compensation are too complex to be well understood by patients because they are written by professionals.
  • Planned meetings would mean a burdensome travel experience for patients that were not taken into account and no support was provided or there is not even barrier-free access for impaired persons.

So, it doesn’t seem too far-fetched that patients may be concerned about the real intentions and interests of the industry. Some may imply that patient-centricity talking is just lip service and pharmaceutical companies just want to make money without caring for the real interests of patients.

Why could that happen?

It is so obvious and yet often forgotten…

Patients are very different actors! They are special and may also have a critical view of the pharmaceutical industry. It is therefore of utmost importance to understand and carefully secure the most important aspects for patients when it comes to collaborations with the industry.

How can that be realized?

Understand important aspects for patients and make them your principles when interacting with patients, such as:

  • Credible communication
    o Be clear about the value/need for the patient and your company
    o Secure your company‘s long-term commitment and be very transparent about agendas
  • Inclusiveness
    o Understand the burden for the patient partners you work with
    o Adapt contract templates to laymen / not-for-profit
  • Reliability
    o Skilfull project management and moderation
    o Measurable outcomes
  • Shared data pool
    o Define the goals of all stakeholders precisely and confirm with them
    o Share results and outcomes

General guidelines for contacting patients

Helpful guidelines are also provided by international coalitions such as the Association of
the British Pharmaceutical Industry (ABPI) and the EUPATI guidance for patient involvement.

Also, the EFPIA provides the most recent guidance for collaboration with Patient Organisations including the European Patient Forum.

Major topics include:

• Why interaction? • Principles of engagement • Value to Patient Organisations • Hurdles and potential solutions

What else should be considered?

Once the HOW-framework is set – you should also think about a meaningful form of interaction that best serves the purpose

Forms of interactions with patients can vary from surveys (online or paper-based), interviews, and focus groups over patient advisory boards to user tests and co-creation sessions involving various perspectives and also relatives.

What you can take home right now:

Here is a practical example on how to involve candidates to a patient advisory board:

1. Reach out to the identified member candidates
2. Agree with everyone individually and get excited
3. Candidates may start to challenge as it gets to the details – be prepared!
4. Create a draft charter for the envisaged board (addressing the objectives, outcomes, participants, rules and the process, etc.)
5. Obtain internal commitment to charter
6. Share with candidates for open discussion and mutual consent before finalizing

Let’s get it started!

More background on building advisory boards is also part of the Patient Engagement Guide

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