A Wikipedia Week

Wikipedia seems to be attracting even more Pharma interest in recent weeks, particularly as a recent IMS report highlighted how much doctors and patients rely on its content.

It was a pretty immersive week for me last week regarding Wikipedia:

  • A breakfast meeting on the subject
  • Meeting up with some devout Wikipedians over Sunday lunch
  • Finding a little time to make some edits of my own (non pharma related of course)
  • Personally fielding some professional questions about this fascinating community of knowledge

I saw an excellent presentation from, Paul W , a veteran Wikipedian, with 10 years tenure, over 10,000 edits and nearly 400 articles to his name.  He is also a professional PR guy.  You could be forgiven for thinking that these 2 personas would not sit comfortably in the same room, let alone in one human shell.

Paul shared some valuable Wikipedia guidance for PR agencies, that demonstrate PR & Wikipedia are not incompatible entities, as long as the right approach is taken.

These guidelines actually make very useful reading for those in Pharma.  Page 10 is particularly interesting as it outlines the steps required when editing.  There is also a nice summary of Do’s and Don’ts.

These guidelines were created collaboratively on an open Wikipedia page, with input from the community.

Meeting ‘real life’ Wikipedians was an interesting experience.  My discussions with them reinforced the need that anyone with a conflict of interest needs to work with the community to make edits.   I met an administrator who proudly declared he had deleted over 100,000 pages.  While this deletion count seems to be a badge of honour, the motivation behind this, is ensuring Wikipedia, is of a high quality and authored from a neutral point of view.  So any ill advised attempts by Pharma to blunder in and start editing drug or disease pages will inevitably backfire.

Some of my Wikipedia recommendations:

  • Work with the community.  Wikipedia is written from a neutral point of view (one of its five pillars ) The premise is that if you work for a Pharma company, then your opinion about that company, one of its drugs or disease areas, will be biased.  The solution is to work with the community to develop content, identify suitable editors who have contributed good quality articles on similar subjects, suggest articles for creation, use forms to request an edit or use the talk pages.
  • Be transparent and declare conflicts of interest  If you try to contribute under XPharmaCo it won’t work and rightly so.  Corporate or group accounts are not allowed on Wikipedia. It should be, for example, Rebecca, who, on her user page, clearly states she works for XPharmaCo, outlines her conflicts of interest and intent.
  • Be human  You need to speak like a person not a corporation.  Any attempts at corporate speak or a heavy handed approach will simply be met with contempt.  Wikipedia is not a corporation rather a community of dedicated volunteers.
  • Be bold Industry regulations are unclear when it comes to Wikipedia.  Take a clear ethical and considered standpoint.  You will need to have a plan however don’t expect clear regulatory guidance. The UK PMCPA digital guidance spectacularly misses the point, suggesting if a company starts editing Wikipedia it should ensure everything is correct.  I am afraid the community and consensual nature of Wikipedia makes this impossible to guarantee.
  • Have a go If you think Wikipedia is of interest why not try editing it yourself!  You may also want to look for volunteers in your organisation to start making edits.  Clearly these edits need to be outside of any conflicted area and the above bullet points still apply!

I look forward to hearing your opinions or examples where Pharma is currently or is planning to get involved with the Wikipedia community.  And if you have any suggested edits for this blog just let me know…

 

 

Social Media in Pharma – Making it Happen

Last week I presented at the SMI Social Media in Pharma meeting in London.  I got some nice positive feedback that the cases I presented were both practical and useful.

So I have embedded the slideshare deck below complete with speaker call outs.  Feel free to comment on this post or on slideshare.  Happy viewing 🙂

 

 

 

Is the Swiss Healthcare system just perfect and the NHS, well just the opposite?

When I visit Switzerland, it is immediately obvious that everything just works.  It is quite tempting to make damning comparisons with my homeland.

Ignoring the obvious one, about public transport that actually runs on time, I cast my mind to the Swiss healthcare system.

Apparently it is an example to the world, of how a healthcare system should be run and the US affordable care act has at least, been partly modeled on the Swiss system.

Some may say it is unfair to compare the respective healthcare systems of the UK and Switzerland due to the latters relatively low population size and high wealth per capita.  But who cares I will do it anyway.

I should say I have never received medical treatment in Switzerland and the below is formed on an interesting report I read, some discussions with end users of the system and a doctor friend who is based there.

Some points I picked up about the Swiss system:

COSTS

  • It is private, however it is means tested, those with reduced incomes pay lower premiums, or in some cases have the full premiums met by the government
  • Insurers can’t discriminate based on pre-conditions, risk or age and must insure all applicants at the same rate
  • The Swiss have to make a contribution. In a given year an excess (or deductible) of anywhere between CHF 300 and 2500 is paid towards treatment, with premiums adjusted accordingly.  They also must make an additional copayment of 10% of the total costs, up to a cap of CHF 700 (at the time of writing one CHF is worth slightly more than one US Dollar)

PATIENTS

  • In this private system the patient is king.  If a doctor does not offer an appointment at a convenient time or the right service, the patient can threaten to go somewhere else or indeed do so.  Swiss patients are treated like customers, because, well they actually are
  • Things happen quickly.  A Swiss patient can make a same day or next appointment with a GP/PCP.  Blood tests, for example, can be taken and results delivered on the same day. At my primary care practice, it takes me 1 week to get an appointment with the doctor, a further week to get an appointment with the nurse to take the bloods and another week to get the results.  So 1 day versus 3 weeks
  • Urgent MRI scans can be booked in with results the next day
  • A broad range of investigations happen at the primary care doctors office.  e.g. stress ECG tests and ultrasounds

TECHNOLOGY

  • The impression I get, is not that the Swiss have the most advanced and innovative individual pieces of health technology, rather the system fits together and actually works
  • Doctors don’t spend their days chasing after test results.   IT systems in the same hospital can actually talk to each other.  This is a direct contrast to the experience of UK doctors in my recent video blog post

There are of course big differences between the 2 health systems.  The Swiss seem to accept making a contribution, often up to 25% of the total costs.  The English would no doubt hate the idea of paying, even though we do anyway, via our national insurance contributions and taxes.

The NHS is changing but surely the top priorities are to:

  • accelerate the patients transition to a customer of health and wellness
  • make sure the technology works, in an integrated way and reduce some of the huge inefficiencies

I am interested in comments or thoughts, from Swiss, English, patients, doctors… or indeed anyone with an opinion.

Those were the days…?!

‘What sort of sandwiches do you call these?  Uuurrrgghh they are from Tesco! With all the money Pharma is making can’t you at least get lunch from Waitrose or M&S.  And where the hell are the prawns?’

These are some specific memories from a hospital lunch meeting over 10 years ago with a group of doctors from the Elderly Medicine department at a Birmingham hospital, however it was typical of such events.

I was a medical representative at the time, bringing the departmental staff a lunch in exchange for a miniscule amount of time to talk about my drug.

There clearly IS such thing as a free lunch as many of the doctors used to take a sandwich and walk off before the talk, I recall one of them muttering about the the quality of the mayonnaise and how the rep from Pfizer at least puts on a decent lunch (I wondered if she stayed for the Pfizer talk – probably not)

I started the talk, with such a dismal time allocation, that even if my pharmaceutical treatment was for premature ejaculation I would have struggled to reach a conclusion.  (Nothing so exciting unfortunately – Gastric reflux)

If it was not bad enough that my words were smashing down on the stony ground of disinterest, one doctor began talking loudly on his mobile phone, I forced myself uncomfortably on, trying to explain to the group with something approaching passion that all Proton Pump Inhibitors (PPIs) are not the same.

The doctor continued to talk on his mobile, then a loud interruption from the chair ‘I will only allow one conversation at a time here’ he boomed.

At last I thought, a return to some decorum.  I carried on talking but so did Nokia doctor.  The chair interceded again, even more forcefully ‘ I have told you only one conversation at a time!’ and it was then I realized he was talking to me.   ‘A doctor is on the phone this could be a life or death situation’

‘Fair enough but can’t he just cart his sandwich laden girth out of the room to check’ were the, thankfully,  unspoken words of my l’esprit d’escalier.

Anyway Nokia doctor soon concluded the conversation, his wife now clear what he was having for his tea that evening.  I was allowed to continue.

In the dying seconds I waffled something about how they should consider my PPI due to the low interactions with Warfarin in elderly patients.  The short discussion resulted with unanimous agreement from the doctors all PPI’s are the same and that they will continue to use the competitor product (Did I mention to them apparently it causes terrible diarrhea? – probably a bit late now…)

As I hurriedly grabbed my case and coat a few of the more helpful Doctors enthusiastically explained where the nearest Waitrose was for next time.

The reason for the anecdote is not to mock doctors or the pharma industry but rather highlight and contrast an historic unhealthy working or rather not-working relationship between the 2 parties.

Fortunately things are different now. The feedback via projects I work on and the forward thinking clinicians I speak to, is that there is an appetite to work with Pharma as equal partners to solve some of the challenges in the NHS.  Providing value, increasing efficiencies, improving patient outcomes, reducing hospital bed days through the use of innovative services and technology are just some examples.

The health service is moving on, but is the Pharmaceutical industry?

Will pharma seize this opportunity or will it be just another trip to Waitrose to stock up on the prawn sandwiches?

 

 

Zen and the Art of Body Hacking

Most of the efforts and experiments I see in self-measurement, quantified self, body hacking or whatever you choose to call it, tend to be focused on physical health and fitness.  Fitbit and Jawbone are the obvious hardware embodiments of these endeavours.

Clearly there is value in this, yet I see relatively few experiments in the measurement and improvement of psychological health.  The mental Yin to the physical Yang.

I have long had an (until now unpublished) interest in using self-measurement and biofeedback to increase focus and reduce stress in a business environment.

The goal of my experimentation is to keep the business success, even improve on it through increased focus and at the same time reduce the negative effects of stress when delivering these results.

I have been using the HeartMath Inner Balance device that connects to my iPhone and measures Heart Rate Variability (HRV).  Low levels of HRV indicate stress and higher levels relaxation.  There are plenty of articles that provide more detail however I like this recent one, that both explains HRV and highlights its potential value from a business perspective.

There is a lot of work going on in this area but most of it (including the above article) centres on dedicating a specific time during the day to improve your HRV score…

..In my experimentation I had another idea as outlined in the video below…. 

 

The Shadowed Utopia of Big Data in Health Care

There are many of us that collect and monitor various aspects of our health, for example fitness, weight, sleep, mood, diet etc, sometimes for interest but often to achieve a specific health goal.

A lot of the devices and apps we use to collect this information are increasingly automated and minimally intrusive.

The big challenge is getting all this data in one place to analyse and see trends, as most of the apps don’t talk to each other and there is not yet an effective ‘common platform’.

Anyway here is a video summary of the blog, or keep scrolling!

So imagine the health utopia we can create, if we fast forward a few years, where all of our health profile data is stored on a common platform.

  • Biosensors will be able to collect and store virtually all of our important health and lifestyle data, without us noticing.  Our ECG, breathing, eating, metabolism, blood chemistry, mood and physical activity data will be transmitted and stored into our online health profile
  • Our medical records and personal data, such as family history, susceptibility to diseases, genetic profiles, allergies  etc. will be uploaded into our health profile
  • We will get personalised recommendations on how to maintain optimum physical and mental health.  Take a walk, a glass of water, medicine, a fruit juice, holiday etc. We will also get entire personalised wellness programs that can be made fun by competing against ‘similar’ individuals
  • Millions of other peoples anonymised data can be uploaded.  We can compare the lives of others who have similar genetic make up and the effects their lifestyle has on them, therefore helping optimise our own

This utopia comes from the combination of our collective health data.  Current studies are often flawed by assuming that we are all the same.  In this ‘new-world’ we can compare ourselves with similar people, having confidence the predictions are accurate.

For example, maybe for your genetic profile, you have a higher than average susceptibility to a specific type of cancer.  But a specific diet or supplements can reduce this  significantly.

And it won’t be about making us all ‘health-nuts’.  On the flip side it might tell you to ‘live a little’, enjoy fatty and salty food, maybe even drink and smoke (with of course a degree of moderation) as your personal risk from lifestyle diseases is particularly low.

It sounds a great world to me, we can relax and not obsess about our health, yet we get valuable personal insights and recommendations.  We can chose to ignore them but at least it is an informed choice.

There is a major but, There is no such this as a free platform.  Facebook is the obvious example where we lose control and ownership of our data.  Do we sell our digital health data down the river to get access to this utopian health platform?

There has been recent UK media coverage about the potential trade off we make with our personal data and how current regulations are struggling to keep pace.

There are some key principles that should apply in the use and sharing of our health data, now and in the future:-

  • You should be able to opt in and opt out at anytime (withdrawing your data like money from a bank account)
  • The sharing of your data should not harm you, for example being denied health or life insurance as a result of using the platform
  • Sharing the data must benefit you.  Only the most philanthropic would actively share their data, knowing it would help society generally but they would get zero return from it
  • Efforts must be made that your identity remains anonymous despite the challenges in doing this in a big data world
  • The approach should be inclusive, i.e. all have access to the system and we should not create a ‘digital underclass’  Actually if we allow significant sectors of the population to miss out we also miss a big opportunity with that data

Enforcing this in the new world will not be easy, however the custodians of our data must be held accountable via strong regulations, if any harm comes to us.  These would be regulations ‘with teeth’, heavy fines and even criminal prosecutions if assesments are done poorly and safeguards not implemented correctly.  Current data protection rules are inadequate in the world of #bigdata.

I find this new world and the direction it is going very exciting, many others understandably do not, mostly for the reasons above.  I normally find the subjects of regulations and compliance rather tedious, however it is essential to get this right, to take hold of a great individual and group wellness opportunity and to prevent our individual and group data violation.

The What and Why of Big Data in Health Care

I feel I must start this blog by plugging a book.  And no it is not one I have written.

The 2 reasons for plugging it are:

(1) It is actually a very good book

(2) I have ‘lifted’ a few of the healthcare examples for this blog

The book ‘Big Data – A Revolution That Will Transform How We Live, Work & Think’,  is a broad discussion on the opportunities and challenges around big data now and into the future.

Anyway read on, unless you want to see a summary video blog of this post, on a very scenic but windy Budapest hill top!

Taking it from the start, what is Big Data again anyway?

Big Data is defined  as ‘data sets so large and complex that they can’t be processed by traditional tools’

A fairly vague and subjective definition.

The advent of Big Data as a term has unsurprising coincided with the voluminous explosion of data in our world.

A nice 19th century example illustrates that Big Data is not necessarily a new concept.  Commodore Maury used ship logbooks to identify more efficient routes at sea.   It cut journey times by a third.  This was data that was previously never shared, meaning that sea crossings relied on the experience, instincts and intuition of the captain.

This historical example highlights a very important aspect of big data.  Using the original data for a secondary purpose.  There were many regulatory and practical reasons for logging a ships position however improving journey times was not one of them.

Today several factors are coalescing to drive Big Data

  • Ease of collection: We can attach affordable sensors to practically anything
  • ‘The Data Exhaust’: A huge volume of data is generated as a by product of our daily actions, e.g. internet searches, phone calls, credit card transactions, medical monitoring and so on
  • Storage:  There are now cheaper and more accessible ways of storing large volumes of data
  • ‘Processing Power’: Affordable and accessible tools now exist to combine and interrogate mass data sets
  • ‘Big Data Mindset’: Leading organizations and individuals are becoming increasing skilled in exploiting opportunities inherent in the data

Big Data is even proving that Einstein got it wrong, with one of his famous quotes. (actually many attribute this quote to Einstein but the evidence is not conclusive )

‘Not everything that can be counted counts, and not everything that counts can be counted’

It is true that not everything that we collect will be of use, but there is no way of predicting this at the outset.  So there is a strong argument for ‘counting’ absolutely everything.  And with the technology available there is very little we cannot count.

Anyway bring it back to healthcare with the examples:

  • Tracking and predicting epidemics: The Google Flu example is not a new one, however the essential insight that a set of, seemingly unrelated, keywords searched for in a particular locality can predict a flu outbreak is interesting.  (in addition to flu related search terms) Google might, for example, tell us ‘Increased searches for chocolate bars correlate with a greater incidence of the flu’ in a specific geography, although we may only speculate on why.
  • Medication Adherence:  All sorts of seemingly irrelevant data points, such as where you live, how long you have lived there, if you own a car etc can be crunched to predict your likelihood of taking your medication as prescribed.  It is pure correlation.  Buying a car won’t necessarily help you take your medicines at the right time. Again not a new example but an interesting and controversial use of #bigdata
  • Human health data: 16 different biological data streams were captured from premature babies, that when combined in the right way, using algorithms, were able to detect an infection 24 hours before it became visible.  This means earlier more effective treatments.

In all these examples the data tells us What is happening but not Why .  Big Data is there to predict but not to provide answers.  If drinking orange juice and aspirin was to lead to remission in certain types of cancer patients, the what (i.e. remission) is more important than the why.  Of course the why would  be of immense interest in further study.

These examples only mark the surface of what is possible in healthcare.  We miss a big opportunity as most of the data captured from patients, i.e. ECG data is just discarded.  In most cases the systems are not in place to integrate the various streams of data and deliver meaningful insights.

All sorts of questions remain about who owns the data, and current data protection rules break down in this new world.  How can you meaningfully opt into the collection and use of data, for a purpose that has not even been envisaged yet.

Big Data is Big News in many fields but surely, despite my bias, the advances in healthcare will be the most exciting.

 

 

Social Media and Patient Advocacy Groups

 

Recently I presented a workshop on Social Media to a global assortment of patient advocacy groups.

An incredibly enriching experience, 
I walked away feeling I had learned even more than I imparted.

And that for me was a good thing – I loved hearing the groups share their successes and how they search for opportunities where Social Media can enhance the support they can give to patients.

The most significant thing that struck me was their incredible sense of purpose

.

When you consider big companies, the goal is often ‘Just Do Social Media’, the sexy tactic waiting for a strategy.

These guys had an abundance of drive and clear goals, with Social Media a potential vehicle.

They were not interested in a Social Media project for the sake of it – it needed to be aligned with a greater purpose.

The group shared some incredible examples of their work, through committed individuals bound together as a team.

One such example was a change to one countries national policy in terms of reduction on medication copayment
.  Social Media clearly has the power to support such efforts.

It was interesting to hear some of the things that the group wanted from Social Media.

  • Enhancing their offline advocacy and public policy initiatives
  • Establishing more meaningful and enduring connections
 with patients and other important stakeholders
  • Planning the use of Social Media, to be able to respond quickly yet in the most appropriate manner
  • Helping patients to understand as much as possible about their condition

 and its management
  • Generally making sure they are using Social Media in the best possible way
'So what is Social Media?.... Er let me think about that for a while'



‘So what is Social Media?…. Er let me think about that for a while’

 

It was great to hear this feedback directly from those at the front line rather than the usual insipid market research presentations.

The use of Social Media varied widely amongst the groups, so there is clearly a big opportunity to magnify the impact of their campaigns by using Social Media.

Indeed many were new to Social Media, but others were particularly established, caring for vibrant and burgeoning online communities.   These communities offer mutual support and work towards a common purpose.

My biggest personal challenge was minding my language, not so much the expletives, rather speaking at the right pace, to a group of non-native English speakers.

I had to restrain myself from going into a 450 word per minute frenzy on this exciting topic and not peppering my vocabulary with technical and business jargon.  The feedback was I managed this, although it required some serious concentration.

So I learned that objective setting for the patient advocacy groups is not a priority, as they are pretty clear on this already.

Areas they may need further support on are:

  • Understanding the tools available to understand the broader digital landscape in their therapy area
  • Aligning ‘traditional’ advocacy and public policy initiatives with Digital and Social Media
  • How to measure success and understanding what Social Media has contributed.

To be fair these are my assumptions not their requests – with the above recommendations I am probably guilty of self-marketing as I would love to be involved in more of these events!

Can Pharma collaborate effectively online with the medical community?

 

How do we engage health care professionals (HCPs) online?  You know with Social Media, The Internet and all that stuff?

The sentence structure may vary but it is the type of question I am asked quite often.

The obvious reply is a question – Why?

Actually Pharma often has a clear goal for why it wants to work with online communities, which is a good start.  The issue, perhaps unsurprisingly is that the goal is often self-serving.  Exciting for the Pharma company, less so for the HCPs.

If the goal is indeed supported by online collaboration, then I suppose you could whip up a large amount of doctors you have never met, into a frenzy of crowd sourced excitement.  Maybe, but the project needs to be extremely compelling and nevertheless this is still a high risk approach.

This means when thinking about online collaboration, that the first 2 points below are indeed essential AND the 3rd is very likely to be required:

  • Select Health Care Professionals who are active online, join communities and use Social Media
  • Ensure there is a high level of value, in the short and long term, for those that you invite
  • Select those that you know personally, ideally who you are collaborating with already in, i.e. advisory boards & face to face events

What better way to represent than a Venn diagram 🙂

The 'sweet spot' of HCP communities
The ‘sweet spot’ of online HCP collaboration

 

Clearly the HCPs need to be active and comfortable interacting Online and the project needs to offer them Value but to minimise risk you really need those that you have a good Relationship with.

Also consider that those core HCPs may become advocates and invite other HCPs to take part (depending on the community goals and how open or closed it is)

I once saw a Pharma-HCP attempted online collaboration fail terribly.  In that particular example HCPs were already working closely ‘face-to-face’ with a Pharma company on an initiative.  The proposed online Social Media extension of this seemed valuable and aligned to the project goals.  However most of the lead HCPs were very uncomfortable with the online world, particularly Social Media and refused to give it a chance. (to be fair the ‘selling in’ process also left a lot to be desired)

In my experience some of the most important steps in making this work are:

  • Create an implementation plan based on the short and long term project goals
  • Define a clear moderation and use policy for the community, written in straightforward and human language
  • Provide a clear explanation of the online community project, its value to the HCPs and how it aligns to the ‘offline’ project
  • For the ‘core’ HCPs this should be outlined ‘face-to-face’ at meetings or in person, e.g. using a Medical Scientific Liason from the company.  This is intensive but can pay dividends
  • Unless the platform and method of using it are entrenched, training should be given and the above policies outlined
  • Moderator(s) and a number of ‘active contributors’ need to be identified who will generate discussion and drive the project forward
  • A steady stream of relevant content is required, to spark discussion and debate
  • Importantly Pharma needs to be able to respond spontaneously in discussions and  not be constrained with needing to approve everything that is said, before posting it

Clearly local regulations need to be adhered to and an ethical approach followed.   That said these projects tend to be fairly low risk, as the communities and the discussions on them are usually fairly well controlled, limited to HCPs and mostly by invitation only.

This is a great opportunity for Pharma to build closer relationships with HCPs, in projects of mutual value.

Many wrongly assume that HCPs do not want to engage with Pharma online,  they are certainly prepared to, as long as it is on their terms.