Dealing with a health condition is difficult on many fronts. From the physical, financial and emotional challenges, right through to the mental toll it can have on a person, it’s a typically stressful time for patients and their families. Patients are often looking for support while dealing with their health. In many cases, a patient will look to his or her health provider for that support –– but increasingly patients are looking toward patient organizations who have a deeper understanding of their specific health journey.

To get a deeper understanding of the patient experience, we recently conducted our 2019 Patient Services Survey. In it, we asked 4,000 patients with one of three specific conditions—Migraine, Rheumatoid Arthritis or Chronic Lymphocytic Leukemia (CLL) —from the US, UK, France and Germany to share their experiences with services offered by patient organizations versus services offered by pharmaceutical companies and other healthcare players.

The research from the survey showed that all patients, regardless of their country or disease state, highly value patient organizations and prefer to use services offered by those organizations over services offered by pharma companies. The question is why? Why do patients feel this way? And are there opportunities for pharmaceutical companies and other healthcare players to provide a better experience?

Why pharma companies and patient organizations need to collaborate to deliver better patient experiences

Fifty-six percent of patients are more willing to talk to patient organizations about the daily impact of their condition compared to pharmaceutical companies (49%). The reason? Patients said that they trust the information they get from patient organizations and find them easy to engage with.

How willing would you be to share detailed information about the daily impact of your condition with each of the following organizations, if it helped you receive better care?

One of the key factors for this, I believe, is the opportunity to connect with other patients and health professionals in similar situations. When a patient can connect with an individual or group of individuals who understand the nuanced experience of their specific health condition, they feel more trust. Unfortunately, less than half (47%) of the patients we surveyed believe that pharma companies truly understand the emotional, financial and other needs related to their condition, whereas, in the US, 67% of patients say patient organizations understand their needs.

I’ve seen this in both a professional and personal setting. Roughly one in 10 American’s get migraines. Typically, it is women, after which it is children then men. My sister, Bansi, who’s ultra-creative, suffers from and was recently diagnosed with migraines, which was one of the conditions we studied in our survey. Being in the job that I am, I heard about a campaign a major drug company and a patient organization did in which they asked people suffering from migraines to submit original artwork depicting how the symptoms of migraine personally affect them.

When I asked her what she would have submitted she said, “A hundred shades of rainbow-colored glitter fabric making a mosaic around a big white open space which is my migraine. The glitter pieces represent all of my ideas and things I want to do and make, and the white space is my migraine, which is where I am –– unable to do anything.”

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"I think it’s far more appropriate for patients to engage with the patient organizations because we’re unbiased. We can give very clear evidence-based support and information and that will help the patient better self-manage their condition."

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—Arthritis Patient Organization, Deputy CEO, UK

e has a migraine, she is surrounded by beautiful ideas of things she wants to do, but the migraine won’t let her. It was a beautiful but painful image to hear about, but it very effectively communicated what it was like to suffer from a migraine. Sadly, the campaign only existed for a brief period and Bansi was unable to participate, which she was disappointed about. I use this story because it highlights the impact of even small collaboration between pharma companies and patient organizations can have on the individual.

Bringing pharma companies and patient organizations together in meaningful and sustainable ways is, I believe, one of the key solutions for establishing increased trust between patients and pharma organizations.

Co-creating better patient outcomes

I recently attended an event with the American Liver Foundation (ALF) at which I spoked with 20 to 25 pharma leaders from a range of companies in the sector. During this event, I brought up the fact that pharma companies don’t always know how to collaborate with patient organizations, and that is creating a lot of missed opportunity for patients. 37% of the 4,000 patients worldwide felt that pharma would better understand their needs and the needs of other patients with their condition, if they improved collaboration with patient organizations, while an additional 34% said it would increase their level of interaction with a pharmaceutical company, which has benefits in terms of gaining more insight into therapies.

As an experiment, I had the group break into smaller pods, each of which had different representatives from patient organizations, ALF, and pharma and asked them to individually identify pain points they believed relevant to their patients, considering things like financial challenges, the emotional toll, etc. In a very short time, the groups identified many overlapping pain points. We focused together on the emotional burdens patients experience related to a condition relative to a specific part in the patient journey. This was relevant, as our survey showed 54% of patients worldwide said their condition has a daily emotional impact on them (that rises to 72% in the US.).

What is the emotional and financial impact of your condition per day?

The higher emotional burden that patients experience is not always at the forefront of what pharmaceutical companies and other healthcare players are thinking about when we put patients at the center. However, for patients, emotional well-being is often core to value. Through collaboration, we were quickly able to identify a pain point that was being overlooked, which then allowed us to look for solutions with it in mind.

There’s a lot left to work through to bring solutions like this to the market in a sustainable and compliant way, but collaboration is what got us pass the first challenge and allowed us collectively to focus on what is truly important: the patient.

New measures of patient value

The conversation with my sister and the ALF experiment both showed me is that there are ways to help lessen the impact of dealing with a health condition through collaboration. It’s important to think beyond just creating a more seamless experience for patients –– and the question we should be asking is, how can partnering with patient organizations support the opportunity to build entirely new patient experiences and bring new value?

If a patient like my sister, who suffers with migraines, is dealing with a patient organization, how can a pharma company plug into that to provide complimentary services? How can we co-create an integrated and consistent experience? In many cases, patient organizations sit at the center of information, people and treatments. They’re trusted places where many patients get counsel about the realm of treatment and care possibilities and options.

I believe there is still much untapped opportunity for pharma companies to work with patient organizations to find compliant ways to work together, not requiring direct or implied endorsements. Exercises to co-create can serve as the link that helps bring the patient organization closer to the pharma company, which will drive better patient experiences and outcomes.

What could result from an improved level of collaboration between patient organizations and pharmaceutical companies?

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Pharma would better understand my needs and the needs of other patients with my condition.


It would increase my level of interactions with the pharmaceutical company.

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For more information on the survey results, please read: Better together: Why pharma companies and patient organizations need to collaborate differently to deliver better patient experiences.

Keena Patel

​Managing Director​

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