Patient and industry engagement

Rebecca Aris


Without patient engagement the industry cannot fully understand patient needs and work with patients to achieve common goals. The patient should be at the heart of the healthcare industry – a fact which makes patient and industry engagement essential.

This was reflected in the opening statement at the recent PM Society ‘Patient and industry engagement’ conference:-

Patients more than any other healthcare stakeholder, share similar ambitions with pharma.1

The focus of the meeting was on how pharma could better engage with patients and, more specifically, patient groups and the importance of such engagement. This article details the topics discussed at this meeting.

Patient groups and industry – the evidence so far

Currently the interaction between pharma and patient organisations is vast, especially from larger pharmaceutical companies, who often have links with hundreds of patient groups. Top ranking pharma companies employ personnel dedicated to the task of working with patient groups – clearly recognising the importance of such engagement.

Pharma offers organisations support in the following areas:

• Disease awareness campaigns

• Patient information

• Patient empowerment

• Patient advocacy

• Specific patient group activities

• Patient group meetings / conferences

But is pharma engaging enough?

Whilst pharma has been engaging with patient organisations, research shows that there is little outreach to smaller community based patient groups, despite the fact that these patient groups work closest with patients and their distinct knowledge of patient needs.2

Some surprising revelations from patient groups indicated that some had not been approached by pharma at all and others were contacted only when patient recruitment for clinical trials was required.² In addition, patient groups have also indicated that they have received no follow up information on their engagement with pharma or on the clinical trials they have helped recruit for.

So it would seem that there are patient groups who aren’t being approached at all and would like to be. This indicates a disparity in how many patient groups exists compared to how many are being engaged with. Furthermore it would suggest that patient groups who are being contacted want more involvement and want to be contacted with follow up information.


“…there are patient groups who aren’t being approached at all and would like to be.”

How do patient organisations feel about engaging?

Patient groups’ satisfaction with working with pharma varies from country to country with 95% (of those who have engaged) of patient groups in the Netherlands claiming to be satisfied with their collaboration with pharma compared with only 75% of Italian patient groups. A total of 91% of patient groups in the UK claimed to be satisfied with their interaction.3

Figure 1: Courtesy of patient view:

What makes a patient group decide whether to engage with pharma?

When patients groups were asked ‘What factors would promote your group’s willingness to partner or work with a pharma company?’, 93% of those in the UK noted that having ‘been clear about what the company would expect from a relationship with our organisation’ was important. Other popular answers include ‘trustworthiness’, ‘a strict code of practice when working with organisations’ and ‘a clear set of mutual interests with our organisation’.3

Popular barriers to working with a pharma company included:

• Poor availability on the part of the company’s contact person

• A company that has a poor reputation in the media

• Lack of feedback from the company about the results of the relationship (from its viewpoint)

• Only being allowed to deal with the company’s communications agency, and not with the company directly

• A dislike of the communications agency with which the company works


“Symptoms for pituitary disorders are vague in nature, which is why it often takes years for a correct diagnosis…”

Two examples of patient / industry engagement

Patient group perspective – the pituitary foundation

The pituitary foundation provides support to patients with pituitary diseases, of which there are 80,000 in the UK, and their carers. Patients need varying levels of support – some patients require surgery, some radiotherapy and some hormone replacement therapy, resulting in a spectrum of patient needs.

Symptoms for pituitary disorders are vague in nature, which is why it often takes years for a correct diagnosis (the average time for an adult receiving a correct diagnosis is 5 years). In addition, a GP may see only one or two patients with a pituitary condition in their medical career highlighting a need for increased awareness in the medical community to achieve a more prompt accurate diagnosis for these patients with a rare disorder. The primary concern, therefore, of this patient group is receiving a correct diagnosis.

The pituitary foundation currently works with pharma to represent the voice of patients and their collaboration is on an open and equal basis. But there remains plenty more scope for them to engage with pharmaceutical companies. Specific support needs they have identified include:

• Help in funding support such as distributing and publishing of education materials to better educate HCPs.

• Support understanding changes to the ABPI code.

• Help increasing disease awareness as there is a lack of community support compared with larger disease areas.

Patient group perspective – breast cancer group: breast cancer care and industry engagement

Breast cancer care works with the industry within a strict policy that they developed over two years with the ABPI code in mind. It has been approached by some pharma companies asking to partner in ways that would technically breach the ABPI code, but their awareness in this area means they are able to act in accordance with it.

These two examples indicate that the needs of patient organisations are varied and the potential for collaboration with them is vast, but a ‘one size fits all’ approach to working with patient organisations will not work. One thing that is clear is that regardless of the size or needs of the charity they are sure to pose plenty of opportunities for successful engagement with pharma and the charity will be able to accurately represent the views and concerns of the patient.


“The number of patient groups is increasing, with the biggest increase being seen at a local level.”

Patient information – best practice principles

Pitch communication at the right level

Consider that the appropriate reading age for patient information is 11 (according to breast cancer care) to 12 (according to Patient Information Forum) years of age. The pharma and healthcare industry can easily assume too much of patients, but it is imperative that patient information be delivered in a way that can be understood.

Adhere to code principles

Another important point to consider is regarding code principles. Communications with patients must be non-promotional, factual, unbiased, not raise unfounded hopes of successful treatment and not mislead regarding safety. In addition, it is essential to remember that in the UK market POMs (prescription only medicines) must not be advertised to the general public.


The number of patient groups is increasing, with the biggest increase being seen at a local level.4 Local groups are much more connected with individual patient needs, so pharma really needs to step up its engagement especially in the area of smaller groups.
Patient groups will become increasingly important as memberships increase and we see more come into existence, plus their influence networks and understanding of patient needs will only grow.

The key ways that pharma can help patient groups and improve collaboration include:

• Providing access to quality information sources.

• Providing unbiased information.

• Encouraging social media peer-to-peer interaction.

• Encouraging shared decision making.

• Following up with patient groups on any engagement outcomes or trial results.

• Measuring patient outcomes.

• Making the patient experience better.

• Providing speakers at meetings and helping at conferences.

• Reaching out beyond their specific product and helping with general disease issues.

• Recruiting members to patient groups.

• Where doctors may be unaware of patient groups, pharma could also help by providing mapping of local patient groups and resources in the community.

• Ensuring that the ABPI code is adhered to!

Most patient organisations welcome collaboration with pharma and have a lot to offer. The key thing to remember is that every patient group is different and has different needs. Listen to their individual needs and opportunities to learn from each other will be abundant.



2. Various PatientView surveys and publications, 2009-2011

3. How Can Industry Build Partnerships with Patient Groups?’, a July 2011 PatientView survey of patient groups, results published in PatientView Quarterly, Summer 2011

4. PatientView’s global database of patient groups

About the author:

Rebecca Aris is Managing Editor of pharmaphorum, the dynamic online information and discussion portal for the pharmaceutical industry. For queries she can be reached through the site contact form or via Twitter @Rebecca_Aris.

How can pharma better work with patient groups?