Church House Conference Centre in Westminster provided an excellent venue for the latest PM Society half-day meeting where delegates gathered to hear from a range of speakers on issues surrounding building meaningful relationships between patients, patient groups and the pharmaceutical industry. The programme was introduced by Mat Phillips, Vice-Chairman of the PM Society and CEO of Engage Health Alliance who set the scene by putting into context the enormous breadth of innovation underpinning pharmaceutical research and its impact on patients. Mat PhilipsVery recent breakthrough studies of anti-malarial vaccines, which can potentially help the 8,000 people who die every day of malaria, are in stark contrast to drugs that dramatically help the one person diagnosed every 8 days in the UK with a rare genetic condition like muco-polysaccharide disease (MPS). Providing access to these innovations pose very different challenges to industry, but the common bond is the need to put patient needs first and work outwards .Any discussion about relationship building must start here, addressing the  very specific and complex challenges posed by both scenarios, which occupy the extreme ends of the role played by the pharmaceutical industry.


With this, he then introduced Dr Alexandra Wyke, Founder and CEO of PatientView. Alex began with an overview of the current state of engagement between patient groups and industry, stating that patients, more than any other healthcare stakeholder, share similar ambitions with the pharma industry. Because of this, healthcare stakeholders should theoretically be pursuing a common agenda of improved healthcare and better health for people. The reality all too often is that each healthcare stakeholder tends to be preoccupied with their own agenda with health payers, providers and professionals mostly seeing healthcare as a cost, fearing patient demands which in turn causes patients alarm as they feel what they need is not actually coming their way. Healthcare suppliers (pharma and medical devices) however see healthcare as an investment, as do patients.

According to Alex, industry's response is that most  companies do recognise the importance of working with patients and their representative groups, with top ranking companies employing personnel dedicated to the task. The companies may maintain associations with hundreds of patient organisations worldwide, offering support in the areas of disease awareness campaigns; patient information, empowerment, advocacy, conferences, group networking and specific group activities. When it comes to what patient groups say, Alex cited a July 2011 PatientView survey of 850 patient groups entitled, "How Can Industry Build Partnerships with Patient Groups?" In response to the question, "Has your organisation partnered of worked with healthcare companies in any capacity?" the UK ranked 7th out of 11. Central and South America topped the group with 73% and Germany scored lowest with 38%. The UK breakdown showed 58% saying yes with 47% saying no although most interestingly, only 5% stated they have a policy of not working with the industry or parts of the industry. In terms of patient group satisfaction with their relationship with pharma, the figures were all very high with the UK ranking 3rd at 91% behind the Netherlands at 95% - Italy was lowest with 75%. The figures were similarly high in terms of how good corporate partners have been at respecting patient group integrity with the UK ranking 6th with 86%, again with the Netherlands highest at 99% and the USA and Nordic countries lowest with 71%.

But according to Alex, the industry still has a long way to go. PatientView estimates that millions of patient groups exist worldwide yet even the biggest, most patient-friendly companies number their patient group alliances in the hundreds at most. Yet pharma seems surprisingly reluctant to reach out to smaller, local, community-based health NGOs, often because of the perception that there are too many. Yet these are the patient groups that work closest to patients and possess unrivalled knowledge of patient needs. And, despite patients and the world of patient advocacy embracing the e-health communication revolution (because it has not been thrust upon them), pharma has been slow to develop strategies to utilise these to engage with patients.

A key problem remains the perception of patient groups that pharma is only interested in them when they want something, and even then, they are rarely if ever sent the results when they do engage in research. When surveyed about what would encourage patient groups to work more with a pharma company, the results were the same as in any business relationship with clarity and transparency of expectations along with trustworthiness and treating groups with respect and as equals being key factors. This was reflected in the barriers patient groups identified, the key ones being poor communication with and lack of feedback from the pharma company.

What are the BARRIERS to a successful working relationship between patient groups and industry?

As Alex pointed out, patient groups will become increasingly important because their numbers are rapidly rising with PatientView's own database now listing 115,000 groups worldwide. While the average membership is 250, some of the larger groups have over a million member patients and patients are increasingly wanting to feel they are making an impact. The biggest increase is happening at a local level with local groups becoming increasingly important in the NHS as part of the NHS reforms currently being discussed. And according to a PatientView Survey of May-June 2010 on the success of patient group campaigns, patient groups can amongst other things, have direct input at a PCT level, influence government policy, input into NICE guidelines and achieve changes to legislation. With only 34% of UK patient groups providing practical healthcare services to their country's national healthcare system compared to 78% in Italy and 73% in Eastern Europe, there is clearly significant scope for this to grow.

Alex concluded by asserting that patient groups therefore are already and will increasingly become involved in providing practical services to healthcare systems, i.e., acting as service providers in their own right. Moreover, with the growing use of the Internet and internet-enabled means of communication, patient groups are become ever more networked with their member patients as well as with each other. And as such, MUST be engaged with positively by pharma.


There then followed a brief Q&A session where Alex explained the impact of the recent financial crisis on patient groups. While some groups had invariably closed, others had successfully combined forces to form a more powerful voice and this consolidation and increased efficiency/effectiveness looks set to continue. She also noted that a growing number of pharma companies were also beginning to consolidate the often fragmented knowledge relating to patient groups within their organisations into key personnel or departments in order to maximise the benefits of engagement. She noted that pharma needs to move beyond the rhetoric of putting patients first when many perceive that doctors still come first and that this again will help further establish trust with patient groups. She concluded an excellent session by reminding all the delegates that the best starting place is to try and see the world through the eyes of the patient.


Andy WarrenAndy Warren, Chair of the Principia Patient Reference Group was next to address the delegates on patient engagement and the new NHS and brought an impassioned description of his local patient group, Principia, Partners in Health. A Dept. of Health Pathfinder Social Enterprise, a Dept. of Health Integrated Care Organisation pilot, and a Pathfinder Clinical Commissioning Group, Principia describes itself as a patient and clinician led organisation with delivers local, integrated NHS healthcare services. Andy explained that integration is central to ensuring that the patient gets the right treatment at the right level in the right place at the right time. A key part of this, possibly uniquely, is the funding by the group's 16 GPs of a full time public and patient engagement officer to work with the group's 122,000 patients.

He also stressed the centrality of lay involvement at the heart of the Principia's philosophy and practice. This means that all lay advisers must be registered patients of a constituent GP practice with their role being not to represent the public at large but to bring the public interest to the table.  In addition to all parts of the consortium being equal and having an equal voice in all decisions, Andy also stressed the real value in getting everyone involved at a grassroots level as changes are much easier and much less costly to achieve here than further down the decision making process. Once again, seamless integration is the aim with all decisions being full, final and transparent.

One aspect of the Principia/Rushcliffe Health Network that Andy highlighted was the work of the special interest forums. These are not support groups nor for individual complaints but are active working groups that feed into and influence the commissioning process and service redesign, including links with the Acute Sector. For example, the Diabetes Forum is a fundamental part of the Task & Finish group that redesigned the provision of Type 2 Diabetes care with the GP practices. Similarly, the Cancer forum produced a widely used booklet to support newly diagnosed cancer patients through their treatment.

Andy cited the issue of generic pharmaceuticals as a powerful example of a real world concern that many patients have and where patients and industry could and should work closer together. From a patient perspective the huge variance in product and package design for the same prescription can lead to confusion and a failure to take or complete a course of medicine which can lead to negative health implications. From an industry perspective it can lead to medicines going to waste. He referenced Japan as an example of a more systematic approach to information labelling and suggested it would be a significant improvement over the UK's current approach.

He concluded his presentation with some real world cost savings that a partnership approach can achieve, beginning with the review and subsequent cessation of a Saturday clinic service. Here only very few of the available opportunities were taken up – the cost saving was £50k. A similar review of the Any Willing Provider (AWP) service and its shortfalls led to a saving of an estimated £300k with the scrapping of a Pharmacy First service, which had only minimal uptakes per month saving an additional £150k. Approval and full involvement of the public and patients in the QIPP plan is estimated to save £5m in total! His closing comment was a reiteration of a one made by an earlier speaker about the need to ensure complete and transparent feedback of all information from pharma to the patient groups.

Ensuring that the patient gets the right treatment at the right level in the right place at the right time


In the following Q&A session, Andy was asked how the decision to treat everyone as equal was met in practice when dealing with pharma to which he replied with no problems at all. A final question asked about the impact of the current £20 billion deficit on the relationship between patients and industry. Andy's response was a forthright statement that there is still significant waste in the system, which can be best, identified and then tackled precisely in the ways he had described. He closed with a call for all concerned to continue to move towards more of a culture of "self-help", where people increasingly took responsibility for their own health and welfare.


Pituitary FoundationThe final presentation of session one was from a small charity's perspective and again, passionately delivered by Ms Menai Owen-Jones, Foundation Manager of the Pituitary Foundation. Established 17 years ago by patients and GPs, the Pituitary Foundation has an annual turnover of £250k, receives no government funding and is reliant on public funding with some additional pharma funding. While the charity does not engage in medical research, it does provide social support and care for those suffering with pituitary conditions.

Menai explained that while only the size of a pea, the gland often dubbed "the master gland" is responsible for many different areas of wellbeing including stress response, metabolism, body temperature, growth, weight control, thirst and hunger, sexual characteristics and libido, and fertility and lactation. The most typical cause of a pituitary condition is a benign growth on the gland with an estimated 80,000 people in the UK being affected. However, given the wide range of symptoms associated with a pituitary condition, establishing accurate levels of sufferers is very difficult because misdiagnosis is a frequent occurrence. Indeed, Menai stated that the average time to accurately diagnose a pituitary condition is 5 years and that on average, a doctor may only see 1 or 2 people with such a condition in their career. Given the impact not just on the patient themselves, but also their immediate family and friends, establishing a timely accurate diagnosis is essential. Once correctly diagnosed, effective treatment can be given in the form of surgery, radiotherapy and/or hormone treatments.

Menai recounted the case of Amy, who was eventually diagnosed with Cushings as result of the overproduction of glucocorticoid caused by a pituitary condition. Now successfully treated, the biggest problem for Amy and others like her is thinking that no one understands them and what's happening to them. "This is where we step in," explains Menai.

While only a small charity, the Pituitary Foundation supports thousands of patients each year, and has received over 1600 calls/email requests for help so far this year. Each day, everyone in the organisation comes into contact with people suffering from a pituitary condition via one or more of the services offered. These are a patient information and support helpline, an endocrine nurse helpline, 30 local support groups, a range of publications, a membership scheme, a website and forum and telephone buddies.

The Pituitary Foundation has had a successful working relationship with the pharma industry for over 10 years now, and works positively with a number of the 30 individual companies that provide the 70+ products that can help patients. For Menai, at the heart of this success is the recognition that the patient is at the heart of the organisation's work and that patient choice is vital. Working with pharma companies is important and the organisation bases these relationships on independence, integrity and openness. Again, echoing a comment by an earlier speaker, Menai touched on the fact that patient groups and pharma companies should in theory and practice share a common goal – providing treatment for our patients. In other words, reaffirming the recurring theme of the session of putting the patient first.

When it comes to how the Pituitary Foundation works with the pharma industry, much of this revolves around the sharing of knowledge. This can be via talks and presentations, securing educational grants and funding for research, collating and sharing this information with the wider patient community and also with healthcare professionals. Having a close working relationship with the pharma industry does not however make the charity immune from a range of challenges, most notably the pressure of limited resources and a general move towards project-based funding as opposed to sustained long-term funding. Combine this with the fact that the cause is not appealing to the majority of the general public and it's understandable why the charity faces a struggle to meet the growing demand for its services. In real terms, this makes it harder to spare the time and resource to keep up to date with developments and drugs in the pharma industry.

How we work with the industry

Looking forward and the Pituitary Foundation is committed to supporting education of companies' workforce as well as increasing its proactive work and information sharing. It would welcome more collaborative projects with the pharma industry, especially pro-bono expertise. Menai's closing statement and final point in terms of the charity looking forward picks up the theme of the 1st session – continuing to put the patient first.


During a short Q&A discussion, the actual numbers of those suffering with the condition were discussed with Menai mentioning that due to the very long time taken to diagnose, the actual number of those affected may be considerably higher than the official level. In the US, figures as high as 1 in 5 have been quoted although this includes post-mortem data where growths on the gland were identified but where any impact on the person cannot be ascertained. The need to follow the ABPI Code was raised along with a question on how this was done with Menai responding that the key was to ensure the code was followed and to be transparent about this. The session ended with a question about patients, namely how they found the charity. In addition to information passed on by Endocrinologists the primary route was via the Internet with the charity receiving 11-12k hits a month.


Rina NewtonFor the first presentation in Session two, delegates were treated to a powerful presentation by Dr Rina Newton of CompliMed Ltd on trust and reputation as emerging themes in patient engagement. She began by quoting Andrew Witty, CEO of GSK who said "Trust is all about our permission to trade … Trust is all about making sure we face the issue head on, building credibility and being trusted by external stakeholders." She then highlighted 3 key areas that were causing considerable concern in this area:- payments made to consultants, sponsored attendance of 3rd party meetings, and sponsorships of institutions. Referencing the concerns in the US re the Sunshine Act, the question was raised whether this or something similar was heading to the UK – especially in light of the imminent Code 2012.

According to Rina, the key to minimising these concerns is transparency because this can be hugely influential on trust. However transparency can be significantly affected by public perception, rightly or wrongly, that can be influenced by an increasing number of widely available media articles, aimed at a consumer audience that questions the influence of drug companies on doctors. For example, the dichotomy between the presentation of pharma as either Wonder Drug and Evil Pharma. This is related to a second area of influence – the overload of online information, which is often unregulated. The example of medical information on Wikipedia was cited and the question whether incorrect material should or shouldn't be challenged and/or corrected. Even the PMCPA Digital Guidance 2011 notes that correction of material is likely to lead to more challenges.

In the midst of this sea of information of varying degrees of accuracy, patients and patient groups need information they can trust. The optimum balance for the pharma industry is clearly between meeting patient needs and complying with the code. But, as Rina pointed out, if you don't fully know the content and constraints of the code, how can you best meet patient needs? The key elements are as they've always been in that communication with the patients must be non-promotional; Prescription Only Medicines (POMs) must not be advertised to the general public; communication must be factual, balanced, must not be personal or raise unfounded hopes of successful treatment not mislead regarding safety. Lastly, statements must not be made for the purpose of encouraging members of the public to ask their doctors to prescribe a specific medicine.

In the context of this the recent European Commission press release on POMS was raised and its 4 key areas of concern. Rina noted that 3 of these -that only certain information on POMs will be permitted, that any statements must be verified beforehand and an emphasis on quality were not so much of a real concern as UK pharma was already moving towards this, if not already well ahead of the rest of Europe. Only the proposal to limit channels of communication could be potentially problematic, mainly due to the question marks over how a channel could become officially recognised. She reminded the delegates that these were still just proposals to be debated but worth noting nonetheless.

Perhaps the biggest impact on trust comes from pharma neglecting code principles, falsely assuming that because the context of the code is changing, the core principles also are. "Wrong" asserted Rina before illustrating with a range of media examples where the pharma industry was found to be in breach of the code. This is compounded by the global availability of information on the Internet but even here the guidance is to the point. "Access to promotional material directed to a UK audience provided on the Internet relating to POMs should generally be limited to health professionals and appropriate administrative staff." And where areas are not restricted, public and HCP areas should be clearly separated and clearly identified. Rina cited the example of Bayer's Didget World, the campaign and the RateMyDay app as positive examples of getting it right. The potentially confusing area of information shared on social media sites was raised, especially Twitter where tweets can be retweeted by anybody. But even here Rina explained, guidance was available and adherence to the code entirely possible. (In the later Q&A session, she referred the delegates to the MHRA website for further information, especially about patient groups talking about products.)

Other digital media challenges were highlighted, notably referring either HCPs or patient groups to 3rd party sites, which in turn may carry information, which is deemed to fall outside of the code. The centrality of abiding by the code was identified even in the emerging trend of pharma involvement with patient groups. Rina concluded that the best way to understand and respond to these emerging trends was to see the neglect of code principles as the umbrella under which all the others sit. In other words – know the code, understand the code, and follow the code.


Melanie Kirk of the Strategy Group, PIF (Patient Information Forum), picked up the baton in her presentation on raising the standard of Consumer Health Information (CHI). PIF is a strong collective, independent voice and a social enterprise made up of members from the NHS, patient groups, commercial companies, academics, health libraries and professional groups. It also provides strategy at a director level. PIF's work begins with building the evidence base for patient information, lobbying for patient information and supporting high quality information production. It also supports with distributing/disseminating this information, engaging with patients and ultimately evaluating best practice and outcomes, which is then fed back into the process.

Melanie proceeded to explain why CHI should be at the centre of everything, reminding the delegates that the average reading age that pharma needs to engage with is 12! She cited the example of 500 mg Paracetamol tablets and 200 mg Ibuprofen tablets and the implicit assumption that patients would not confuse one being stronger than the other. Good CHI can have positive outcomes including disease prevention, giving individuals real control over their health, promoting shared decision making, encouraging adherence to treatment plans, improving safety and ultimately enhancing the patient experience. Poor or lacking CHI can have the opposite effect. It can be frightening, confusing and disengage the individual, provide false reassurance, cause unnecessary worry, promote dangerous or harmful treatments, lead to ill health or late diagnosis and ultimately waste time and money. Examples of good CHI were shared including the claim that NHS Direct has added £44m of value to the NHS by reducing inappropriate visits to healthcare professionals.

Consumer Health Information (CHI) should be at the core of everything we do…

What can pharma do with regard to CHI? Melanie reminded the delegates that good communication does not promote brands but does create awareness of issues. Get it right and patients will become the best communicators to other patients, especially with the increasing impact of social media. At the heart of helping patients is the need to provide access to a range of quality information sources – unbiased as far as possible – and then engage with patients to ensure true shared decision making. After all she maintained, quoting from the Kings Fund 2011, "tools that helps patients in making decisions are just as important as guidelines for clinicians."

The value of shared decision making was reiterated. From a pharma perspective it helps advocate brands, from a patient perspective it informs industry and from an NHS perspective it adds to the quality of care and the overall patient experience. She directed the delegates to Lord Darzi's definition of quality, which is split into the 3 concepts of safety, patient experiences and outcomes. What does shared decision making looking like in a clinical consultation? Firstly it supports patients to articulate their understanding of their condition and of what they hope treatment (or self-management support) will achieve. It also informs patients about their condition, about the treatment or support options available, and about the benefits and risks of each. This in turn ensures that patients and clinicians arrive at a decision based on mutual understanding of this information, which can then be recorded and implemented.

She cited the example of why patients don't use their medicines as prescribed to illustrate the need for good CHI and shared decision making. The key determining factor on outcome is including the patient in discussions about their medicine! Melanie concluded by recapping several points made by a number of speakers including the need to produce and share quality information (avoiding duplication wherever possible) – especially by the use of peer-to-peer social media, and to share decision making wherever possible. Patient outcomes should also be measured and fed back into the information generating and sharing process, all of which in turn should help make patient experiences better.


Breat Cancer CareThe final presentation of the day came from Dr Emma Pennery entitled Breast Cancer Care and Industry Engagement. At the alternative end of the spectrum in terms of size to the Pituitary Foundation, the BCC is the leading charity for breast cancer information and support in the UK with a £13m turnover and 200 staff nationwide. Breast cancer and care of breast cancer patients generates huge media attention, partly because of the sheer numbers involved. The underlying trend for the past 20 years has been one of continued global increase with 50, 286 new cases diagnosed each year in the UK. 28% of all cancer survivors are now breast cancer patients although breast cancer still causes 12,116 deaths a year.

Emma gave an introductory overview of all the ways BCC engages with industry and with patients including the provision of peer support, working with retailers to sensitively provide lingerie for women after breast cancer surgery and she described the work of the Lavender Trust which raises money to deliver information and support services for younger women affected by breast cancer. BCC receives 14000 Helpline calls per year and has a sizeable user group with over 700 breast cancer ‘voices' - members who have been affected by breast cancer. It also provides a huge amount of information, which is written by clinicians, peer reviewed by clinicians and lay people before being published. The numerous awards BCC receives for the quality of its information provision shows it must be doing something right.

When it comes to how BCC works with the pharma industry, Emma described the development and implementation of their policy. With no statutory funding, no more than 5% of total income currently comes from the pharma industry although given the prevailing financial climate, this level is under review. BCC is also plans  to review its current position of not allowing any patient facing sponsorship but remains entirely committed to putting the needs of patients first.

BCC's policy encompasses a wide ranging activity list of how it engages with the Pharma industry including commenting on pharmaceutical company initiatives relating to breast cancer – at the request of the press. It accepts information from pharmaceutical companies through documents or attending meetings and speaks at, or participates in, pharmaceutical-organised events, or offers consultancy to them (while maintaining editorial independence). BCC also permits a pharmaceutical company selected clinical representative to speak at their healthcare professional training events as well as directly participating in pharmaceutical company working groups, consultations, market research etc. BCC accepts sponsorship from pharmaceutical companies targeted at healthcare professionals as well as sponsorship for policy meetings. The charity also validates content for pharmaceutical company sponsored websites/publication. Last but not least, it may accept pharmaceutical company donations for psycho-social research.

Emma then went on to explain that impartiality, honesty and transparency are paramount to the charity in terms of achieving success in these activities and in putting the charity's patients first. This is backed up by a cross department approach that involves a robust risk assessment and a rigid sign-off procedure. Regular involvement of lay and clinical staff working in partnership is also important, as is the fact that BCC is more than willing to turn down opportunities or requests where these might be inappropriate. Indeed, maintaining the charity's values in the face of the current economic climate is one of BCC's main challenges – especially when considering options such as funding patient facing activities. Other challenges include managing and resolving any differences of opinion about levels of interaction with Pharma companies between staff and/or trustees and/or volunteers and ensuring the charity has partnerships with more than just one company in any area.


Get it right and the results can be sensational. Emma concluded her presentation with 2 examples – one where they were approached by pharma and one where they approached pharma. The latter was a round-table discussion with journalists about the little known area of secondary breast cancer. BCC was approached by a leading company with the aim to inform and educate journalists, position the charity as experts, provide a forum for health journalists to ask questions and share options in a way that might not otherwise be feasible, and create a basic awareness and understanding on which BCC could build. The roundtable was chaired by a former health Editor of The Sun and was attended by a wide range of journalists including leading newspaper and magazine health writers as well as ‘media doctors'. As a direct result of the event, BCC secured a double-page feature in Woman & Home focussing on a case study and communicating many of the charity's key messages.

With regard to the former, BCC approached a leading company to cover the costs for a policy dinner in Wales to bring together senior figures in the NHS to discuss the priority issue of collecting data on secondary breast cancer. The guest list for Cardiff exceeded the charity's expectations with high profile guests. The sponsoring company had a logo and statement on the event documentation outlining their support but emphasizing that the company had no influence over the topics or content of the event. Their representative at the event did not contribute to the discussions, only speaking once towards the end of the event after listening to the views expressed. BCC benefited by now having a number of follow up opportunities with each of the guests to drive forward the charity's Spotlight campaign.


During a final Q&A session, Emma was asked about the BCC's internal decision-making process. While very much an internal policy, she affirmed it is very much in line with the ABPI. One of the final questions brought everybody's attention back to what had consistently been identified as the true focus of getting the balance right in patient and industry engagement – the patient. In this case it was the sensitive issue of working with patient groups with limited life expectancies with Emma acknowledging that it can be difficult practically and emotionally. She cited the example of working with 12 people suffering from secondary breast cancer where several had died during the project. The benefits from the outcome of this exercise however would go on to be of help to patient groups, the pharma industry and ultimate, other patients.

Meeting Chairman Matt Phillips thanked each of the speakers and the delegates as a whole before drawing the afternoon's proceedings to a close.