By Emma Rooney @blumencasey 

The value of engaging patients in all aspects of healthcare is rapidly gaining acceptance, and with this comes more invitations for patients to share their stories. Pharmaceutical and biotechnology companies are included among the potential audiences. Storytelling is an appropriate starting point for collaboration because it helps relate lived experiences and to find intersections that bring focus on common goals. An invitation to speak to pharma, in a forum that may have been closed to patient voices in the past, signals a company’s willingness to listen to the patient perspective and to find new ways to connect.

Despite the best intentions, navigating this changing landscape isn’t easy for any of the players involved. Our online world certainly facilitates connection-making but it also puts increased public scrutiny on interactions. I often worry if working with industry might tarnish my reputation within the rare disease community as a genuine advocate. My health story certainly speaks to the benefits of life-saving treatment, but I’d rather not become an exclusive mouthpiece for industry. I’m committed to speaking out for increased investment in research and drug development, but a focus on medicines alone is not my complete story. My wellbeing has as much to do with the support of my friends and family, the existence of patient advocacy organizations, and finding doctors and nurses who understand my condition and take the time to understand me. Also my health is a changing story—not all developments are encouraging—and I want drug makers to hear all of this when they ask me to speak to them.

Wariness aside, the industry invitations I’ve accepted to provide input, to speak at internal special events, or to take part in sponsored awareness initiatives, have proved rewarding. For me as a storyteller, there still comes a thrill from reaching a new audience. Only by participating have I also learnt new ways to make the most of new storytelling opportunities. Here are some of my tips, in case you find yourself with a similar invitation.

Tips for sharing your story with pharma:                                                                                 

  1. Find out more before accepting.

Let’s face it, receiving an invitation feels good, but flattery doesn’t oblige you to accept. Lives are busy, being a patient advocate is likely not your only role, and it’s okay to be strategic with your advocacy time. Asking questions to find out more about what you are being asked to do will help you determine if the investment required is worth it. See how your participation aligns with your goals as a patient advocate. Also, think about what the company requesting your story gains from having a relationship with you. It’s not always possible for an exchange to be equal, but looking out for win-win situations is critical to not being taken advantage of.

  1. Own your story.

Before agreeing to share your story and signing any consent forms, understand fully how your story will be used by the company. Confirm that there will be no restrictions on continuing to share your story independently afterwards. Know in advance if any aspect of what you provide might be reproduced, videoed or photographed. Where will the story be shared, with whom, and for how long? If your story will need to be reviewed and approved before presentation, will you have the final say on any changes? Remember that it’s your story, and if you’re not comfortable with the proposed terms, suggest different ones. It’s great that you want to share your story, but you don’t have to lose ownership of it and the key concepts that are important to you.

 

  1. Educate yourself on the regulations and protect your privacy.

 

There are strict regulations that govern how pharmaceutical companies can interact with patients. The rules vary by country but are intended to protect patients from being subject to inappropriate marketing. Generally, I have found the companies I’ve dealt with to be very cautious about breaking any laws and about keeping an appropriate distance. As a patient, you should, however, still take responsibility for educating yourself about the regulations in your area. Patient organizations can often provide guidance. Your doctor or health center may be another source of useful information. When beginning a new relationship, start by asking how the person reaching out got your contact information, and be cautious if it doesn’t seem like an appropriate channel was used. Sometimes someone representing a pharmaceutical company will make contact (not the company directly), and personally, I choose not to continue the conversation if it’s not transparent which company is being represented. Before sharing any of my personal details, I also take a look at a company’s privacy policy.

 

Be aware, that owing to restrictions, you might be asked not to include certain details when sharing your story. For example, I’ve been told in some cases not to include specific treatment information. When such requests are made, I always ask for an explanation from the company, so that I can better understand where they are coming from and how they are interpreting the regulations. Companies may be obligated to report to authorities if an adverse drug reaction is described in your story. You might want to ask about this before you share such details. You can also be the one to set the limits on what you are willing to answer regarding your personal health. Make a plan before you get in front of an audience, so that you’re not surprised into answers that contain more information than you are comfortable providing. Think carefully when including other people’s names or identifying specific organizations or institutions.

  1. Be transparent.

As you may have witnessed at a health conference, doctors usually provide a list of disclosures before giving a talk. This can include items such as where they work or who funds their research. Patient advocates are usually not held to the same professional standards, but we have an opportunity to raise the bar by choosing to provide the relevant context for our sharing. At the beginning, I normally mention any groups I am part of, and more importantly, make it clear if I’m representing a particular group, or speaking as an individual with a rare disease. I acknowledge who invited me to share my story, and if my participation is sponsored in any way. Further, during my story I like to make it clear that the information I’m sharing is from my own experience, not a medical opinion. I also believe my audience needs clear reminders that not all of my health experiences are the same as other rare disease patients, or even others living with the same disease.

Before even getting to the stage, I always let people from the rare disease communities to which I’m connected know that I have been given an opportunity to tell my story. I don’t want to unknowingly be jeopardizing relationships or taking part in something that would not be supported by the relevant patient organizations. Keeping my network informed respects the work of other advocates and helps me make better decisions about my own involvement. In my case, I’m not looking to have an exclusive relationship with any one group or company, and so I always have to make sure, with all parties, that I’m being transparent about my relationships.

  1. Know who your audience is, so that your presentation strikes the right balance: informative with a challenge.

As an audience member, I find it very frustrating when a presenter wastes too much time covering the basics about the disease I have (as if I didn’t know), but then again, it’s equally frustrating when a medical talk is so above my head that I might as well not be in the room. When presenting to industry, I can easily make the same mistakes as my least favourite presenters if I don’t find out enough about my audience. Reading up on a company’s website doesn’t always provide a full picture, as people often work in silos, on specific aspects of a company, without knowing much beyond their role. Many roles include only limited interaction with patient advocacy organizations and no interaction with actual patients and their families. On the other hand, you could be speaking with a select few who know a lot about rare diseases and work in your disease group.

 

Once I know who my story is for, I have to think carefully about what aspect of my health journey I really need my audience to intimately understand. I want to leave each person with an idea of what they can do in their work to improve the situation for people living with rare diseases.

  1. Discuss compensation – not everything we do as patient advocates should be voluntary.

At this point, I don’t have solutions to propose here, but I encourage patients to at least bring up the topic—payment. Good storytelling takes time, effort, skill and, as such, should be appropriately compensated, especially when talking to people with budgets. Many pharmaceutical companies seem to be hiring consultants and marketing firms (I assume paid) to help them with patient engagement and advocacy, yet continue to expect patients to come to the table for free. Modest honorariums may be offered to cover related meals, transportation, and accommodation costs, but I don’t think this goes far enough to honour the value of our stories. There are certainly regulations that make it difficult to pay patients for their services, and talking money can feel like entering the dark side, but compensation needs to be addressed if we want to transform the future of patient driven processes.

  1. Don’t be token.

Be confident that you have lots to offer. Share what it means to be an engaged patient with skills and knowledge—not just a disease. Make sure that how you get introduced sets the right tone, so that your audience sees you as a complete person. I often provide my own bio in advance to help manage perceptions. You also don’t have to be the only curiosity in the room. Request time for open dialogue and ask your own questions. While you’re at it, ask for more time, ask to connect with different departments (especially decision makers), ask for a tour, and certainly ask to stay connected. Of course the answer to any request made may be no, but at least it will clear you are invested in the process.

  1. Keeping growing your relationships with industry.

As my initial reflections suggest, relationships are changing and everyone is finding their way. Invest in your relationships by asking for feedback on your participation and also by taking the time to provide your own honest feedback on the process. If there are things that made you uncomfortable, or you think could be improved, let the company know. If the experience was positive, make sure the organizers hear this as well to continue the momentum for engaging patients. Take the discussion out in public and on social media—share your experiences, share your ideas, and share useful information and resources. We all need to learn together how to work together.

 

Read more about author Emma Rooney here. If you have your own tips to contribute for sharing your story with pharma, I’d love to hear from you on Twitter @blumencasey. Use the #RunningOnStories hashtag to connect.

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