Practical Patient Initiatives: Holistic Approaches and New Channels

 Tuesday 3rd June 2008

 

From Left: Di Stafford, Richard Sawyer, Susan Pollock, Jane Mills, and Rachel Farrow, Vice Chairman PM Society


The second in the PM Society series of 'patient focussed' meetings was held on Tuesday 3rd of June 2008.  The meeting was well attended and kindly hosted by SAS, in Marlow, a company which is a global leader in business intelligence and predictive analytics software. 

The evening's Chair was Di Stafford who is managing director of The Patient Practice, a consultancy specialising in all aspects of patient marketing, communications and patient relationship management.   She has been working closely with the PM Society to develop the trio of 'patient focused' meetings and was a key speaker at the first meeting held in April.

Di set the scene by explaining that in 2007 the PM Society conducted some research that highlighted the pharmaceutical industry was keen to learn more about how to engage with patients.  In response to this, the first meeting in the series was designed to look at patient insight and market segmentation as a starting point for the development of compliance programmes.  The second meeting was designed to consider the next step of looking at what programmes should be developed. The aim of the evening was to share case studies to demonstrate ways of using different communications channels and how to put them together to engage with patients.

The first presentation of the evening was given by Jane Mills a Nurse Specialist with Britannia Pharmaceuticals.  Jane has been working in the field of Parkinson's Disease since 1992 and the aim of her presentation was to give a whistle stop insight into the importance of a patient centric approach to caring for those suffering from Parkinson's Disease.

When Jane started her work in this disease area in 1992, very few nurses were involved in day to day care of this patient group and multi-disciplinary teams were thin on the ground.  Patient care was not particularly scientific in terms of approach.  Information provided was not based on real patient insight, so real needs and wants were not catered for and appointments with the medical teams were held just annually or every 6 months. In addition, GPs and doctors rarely had particular specialism in this area and some consultants still prohibited family and friends attending consultations.

The Parkinson's Disease Society issued a statement that started to help facilitate change:
"We believe all people with Parkinson's Disease should have access to high quality, integrated health and social care services delivered by professionals with a good understanding of the condition wherever they live in the UK."

Work began to look into patient and carer expectations.  It was evident that patients felt neglected, and they had poor access to information and advice. In addition, it became apparent that doctors had difficulty telling patients that they had Parkinson's Disease or provided little in the way of information.  The disease was managed by treating individual symptoms rather than the person as a whole.. As a result, patients suffered and felt excluded from health care decisions..  How can someone challenge or make a choice about their treatment if they don't know what they are choosing?  Bad decisions come from being ill-informed.

 At the outset of any patient communication programme it is important to define its purpose.  What does the company want to get out of it and what does the patient need to get from it?  It is important to support the patient's need for information and find ways to involve patients and carers in the decision making process.   Jane also stressed the importance of thinking of  expected outcomes; for patients and HCPs it is knowledge of service; disease area; the allied therapies; ensuring communication is tailored to individual needs and understanding and respecting different groups of people their behaviours and needs. Importantly there are also professional development issues.
 
It is also vital that any programme is approached from a point of total understanding of the patient group.  With Parkinson's Disease, it was said that if everyone lived until the age of 140 years old we would all have Parkinson's Disease.  Its effects are similar to premature aging, which impacts on hearing, sight, cognitive function etc.  As such, it is vital to understand the capability of the patient and the ability to understand what is being communicated.  The internet might be growing in use but it is not suitable for all patients and in fact many patients prefer to have a physical printed leaflet to read and share with family and friends.  Whilst the spoken word helps build relationships and provides a supportive element to the programme, the written word is vital for long term use.

Also it is important to remember who the desired audience is at all times.  A "trendy" design may look great but if it doesn't appeal to the patient group in terms of demographics, ethnicity etc it won't work and so there's no point. Jane stressed the need for marketers to put themselves into the shoes of the patients and to use their language.  Britannia now works with nurses and the tone of the language is a lot more patient focussed.

For patients with Parkinson's Disease, treatment can be complex and is essentially focused on dopa replacement, however, the process can seem daunting and perhaps a bit scary to patients, so pre initiation counselling is very important. Communication channels need to be in place to discuss treatment side effects, long term use etc. Britannia rolled out a programme tailored to the needs of the patient group that involved 1:1 with nurses and a 24 hour support phone line.  The outcomes have been: improved out-patient attendance, medication compliance, health plan participation, service development and a positive impact on funding and budgets.

Patients come first but they also have to have accountability and responsibility to make these initiatives and treatments work.

The second speaker of the evening was Susan Pollock, Commercial Controller at essentiapharm which is a contact centre that provides compliance and patient support services.  Susan's presentation focussed on a patient support service that they currently deliver to patients with Multiple Sclerosis (MS).

MS is the most common cause of neurological disability in the UK affecting around 85,000 people.  The most common age of diagnosis is 20-40 years and you are twice as likely to be affected if you are female.  Symptoms are wide ranging including: fatigue, mobility, depression, bladder and bowel dysfunction and they affect patients at different levels and with different frequency.  No two patients will be affected in the same way.

It was out of the idea that no two patients are the same that the Copaxone Connections Patient Support Service was developed.  It is a programme that recognises the need for tailoring support services to the needs of the individual.  It is important that each Copaxone patient, whether new or "switch", has access to the same level of support and information.  So having processes in place to identify the knowledge base of the individual is vital.

Patients are given the freedom to opt into whatever communications channels they want to receive. Frequently printed journals are a key part of this programme and have proved hugely successful.  Newsletters and magazines have a real tangible value and benefit to patients, especially when they contain case studies and medical information and are really patient focussed.

Whilst the printed word is incredibly valuable it can only do so much which is why the programme also used inbound and outbound nurse led calls.  It is this emotional 1:1 contact that really provides the human emotional support and reassurance that many patient groups really need.
Patient letters are also a key component of the programme.  With patient consent direct written communications can be sent and can be very powerful because action can be taken to stop patients failing to take medication.

But with so many new communications channels available to us such as the Web, HTML emails SMS Texts etc why use traditional channels?

The Connections services has clearly shown that these traditional communications channels are what these patients actually want.  This highlights the importance of gaining insight into each patient group prior to developing a support programme to ensure you are delivering what patients want and will use.  This is not only important for the patient but also to ensure there is return on investment.

 
The efforts of any patient programme needs to be outcomes focussed and this will usually also drive the commercial wants and desires:

• Educate and empower patients within treatment
• Ensure adherence to treatment over the long term
• Involve relevant parties within the treatment regime

Susan rounded up her presentation by saying that it is important to remember that it is not just about the message a company wants to give a patient it is about closing the loop to get feedback from patients to ensure they are getting what they want.

The third and final presentation of the evening was given by Richard Sawyer, Brand Manager, Roche Products, who shared a case study in viral hepatitis.

On average 11,000 – 12,000 people are diagnosed annually and currently 466,000 people are thought to be chronically infected with HCV in the UK.  But the condition is still woefully under diagnosed and in many cases a patient will live with the virus for 20-30 years before it is diagnosed. Its association with IV drug use also means that the condition is impacted by stigma, and there is poor awareness and lack of resource.

Chronic HCV infection is curable in 50-80% of cases and therapy is endorsed by NICE as first line intervention with cost per QALY of £10,000.  Treatment is challenging and often arduous with attrition likely in the absence of support.  With resourcing limited, patients may often only have one opportunity at treatment so it is vital that it is right and the right level of support is available.
 
Environmental analysis, brand strategy and critical success factors led Roche to conclude that there was a need for a patient support programme that would make a real difference by:

• Improving the patient journey from diagnosis to cure
• Increasing the definition of patient eligibility
• Engaging advocacy and awareness groups in the utility of concordance and patient support

It would also help to differentiate Roche from other companies in the therapy area and demonstrate a willingness to address concordance as a key concern of NICE and commissioning groups.

In order to deliver this, this the programme had to:

• Embrace the right blend of technology and match it to the patient demographic
• Provide multi-lingual support as there is high prevalence in the ethnic communities
• Make user registration and engagement as simple as possible
• Meet stringent in-house standards on corporate programmes, comply with the obligations and standards of rigid pharmacovigilance and reflect the spirit and letter of the ABPI
• Be aligned to all the brand's critical success factors
• Help strip away the stigma and apathy surrounding the condition and help create a warm 'consumer' feel to the programme.

The brand had been in the market for seven years before the programme was started so there was a lot of patient and HCP literature and resources that were well established and still had utility but existed under several 'brands'.  It was important that the programme should be an umbrella for pre-existing resources as well as coherent programme in its own right. So Roche undertook a programme of research with HCPs and patient groups to explore what the unmet needs were of patients and what the blend of technology should be. 

Four key elements were defined:

• Nurses trained in Hepatitis providing 24/7 telephone support
• Website – a comprehensive warehouse of information
• Patient-driven SMS reminder service for medication and clinics
• A quarterly 'community' magazine available to all patients regardless of how long they had been receiving treatment

The whole programme was designed to inform patients and manage their expectations/fears of what it is actually like to take interferon.
Roche received great support and feedback from the key patient organisations such as The British Liver Trust and the National Hepatitis C Network which demonstrated that this investment and commitment was really valued and would make a difference.

Full patient support programmes are complex to deliver, they are not free from issues of pharmacovigilance obligations and any such programme should align clearly to the brand strategy.  In terms of reaching patients the programme shouldn't require them to embrace new technology.  If several communications channels are used within the support programme and subsequently patients engage with one element of it, then that's got to be good. 

Whilst it is important to provide the information that patients require their enthusiasm for 'positive' content should not blind the need for balance.  Employing good technology gives greater utility and accessibility to any programme.  Any programme should use the clinician as the gatekeeper of enrolment and once understood, such programmes can add directly to brand equity and market presence.

Di Stafford concluded the meeting by saying that compliance programmes are vital and are now on the NICE radar as they are not just about selling treatment but very much about ongoing maintenance.  She said that there is research that demonstrates that NICE is looking very positively at compliance programmes and is looking at this whole area in a bid to put systems in place to evaluate them.

The third meeting in this series will be held in October 2008 and further information will be available soon.

Held on: 03/06/2008