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HealtHcare engagement Strategy 2010

Winning strategies for engagement in healthcare

Be inspired announcing the winners of the Healthcare engagement Strategy awards 2010

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If you are in any kind of leadership role in a healthcare company or organization, you will know just how much is changing about healthcare engagement. It’s an exciting, yet challenging time of opportunity for those who discover how to make the most of today’s engagement platforms.

that’s why we launched the Healthcare engagement Strategy awards this year, and I’m delighted to be able to introduce this rich collection of strategy insights from all of this year’s winners. Whatever your role in healthcare engagement, I hope you will be inspired and envisioned by these stories from hospitals, charities, pharmaceutical companies and patient networks that are truly achieving better health outcomes through engagement.

Daniel ghinn Editor, HEaltHcarE EngagEmEnt StratEgy dirEctor of digital EngagEmEnt, crEation HEaltHcarE daniel.ghinn@engagementstrategy.com

Daniel Ghinn

2009 was a year in which healthcare engagement took some giant leaps forward. By the start of the year, platforms for digital engagement had matured to the point where it was possible to reach and engage with a wider community of health stakeholders than ever before.

It was also a year of much challenge in healthcare engagement. At the start of the year, the US FDA wrote to no less than ten pharmaceutical companies warning them about the way they were using paid search. Some responded by becoming very cautious about their digital engagement, whilst others took the opportunity to find credible ways of engaging online. The FDA’s public hearing on social media in November brought together some of the most passionate debate about social media in healthcare and the regulator’s role.

Outside of the United States, whilst some in healthcare complained at the constraints placed on them by regulators, others brought together their legal, medical and engagement specialists to find new opportunities to engage in the ever-changing world of digital media.

So now, we are excited to announce the winners of the Healthcare Engagement Strategy Awards 2010. The selection process has led us all around the world, from Australia to Asia, Europe to the USA. Our international judging panel, to whom I owe a huge debt of thanks for their intelligent and constructive analysis, has reviewed and discussed campaigns from all corners of the healthcare landscape. It’s been an incredible journey of discovery that has led us to select the winners for achievements in

improving healthcare through engagement.

Not surprisingly, it is in digital media that we saw the majority of nominations and finalists. But it’s worth noting that the most effective engagement – digital or otherwise

– was from those who took a fairly ‘old school’ approach of honesty and straight talking. Credibility, it seems, never goes out of fashion amongst patients.

When we designed the process for the Healthcare Engagement Strategy Awards, we wanted to create a new kind of award. One that would recognise outcomes in improved healthcare through engagement, and would leave behind a legacy of insights for others to learn from. Our hope is that by identifying and sharing these strategic insights, we can inspire others to build on them and achieve even better outcomes through healthcare engagement in 2010.

For each of the winners below, we have written a brief report on what makes them special that I hope will serve not only as a celebration of their achievements, but as a guide for others to learn from. For those who wish to learn more in-depth strategic insights from analysis of our finalists, and to apply them to their own roles in healthcare organizations, we’re running a series of special events in the USA and Europe.For those who prefer a more personalized analysis, we are also running a number of in-house events where you can envision your colleagues with a seminar at your own premises. Please do get in touch if you would like to set one of these up.

Finally, it is an absolute privilege for me to name the winners of the Healthcare Engagement Strategy Awards 2010.

Best Hospital or Clinic Winner: Mayo Clinic

Best Patient Community Winner: TuDiabetes

Best Health Issue Awareness Campaign Winner: Skcin’s Computer Tan Campaign

Best Integrated Engagement Strategy Winner: Get Real. Get a Prescription

Best Engagement Through Video Winner: Johnson & Johnson Health Channel on YouTube

Changing Healthcare Award Winner: PatientsLikeMe

People in Healthcare Engagement We have also named four people who brought significant change to healthcare engagement in 2009. Watch these if you want to learn how to make a real difference!

Winners: Lee Aase; Manny Hernandez; Marc Monseau; Andrew Widger

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Treating more than half a million patients a year from its clinics across the US, you might expect Mayo Clinic to know something about patient needs. What impressed us especially about Mayo Clinic’s healthcare engagement is that it has gone far beyond the natural reach of its physical clinic locations to improve healthcare for patients all around the world.

Mayo Clinic takes a proactive approach to engaging patients on healthcare issues that matter to them. Examples of engagement across a mix of integrated channels include shows on Mayo Radio, a radio show streamed online, where people can tweet in questions that are answered on air.

I asked Lee Aase, Mayo Clinic’s Manager for Syndication & Social Media, about this innovative channel for two-way engagement. He explained how the Clinic’s engagement has evolved step by step, building on the availability of expert content:

“It is really helpful when you have some of world’s leading experts on a particular condition. If you can have them talk for 10 or 20 minutes on a topic, that is highly valuable to patients or their families who are looking for the kind of in-depth information that previously was not possible to get.”

Making this kind of content available as podcasts provides a resource that goes far further in reach than the Mayo Clinic would have before. This is especially effective in engaging patients about rare diseases. Mayo gives an example of a podcast about Postural Orthostatic Tachycardia Syndrome (known as ‘POTS’) – a condition primarily affecting teenage girls, which is often misdiagnosed as stress by doctors outside the

Mayo Clinic. Since the podcast was published, it has been heard 20,000 times and Mayo Clinic has received letters from people who have visited from all around the US, after listening to the podcast and finally finding somebody who recognises and will treat their condition.

Lee explained that patient engagement has moved from short-form audio content used for radio broadcasts to longer, podcast content. In the last 8 months, the Clinic has launched an online radio show, Mayo Clinic Medical Edge Weekend, combining specialists talking on radio with input from patients via email and Twitter. Lee said that this approach simply builds on something that started twenty years ago as a call-in show, but the Internet platform now allows engagement with patients anywhere. Planned show topics are announced via a blog, and questions are submitted by patients from all around the world via Twitter. The radio show then goes out online, again available to an international audience.

Expert content is used extensively to support other online engagement channels too. Specialist therapeutic area blogs, such as the Clinic’s stress management blog which is packed with content from Mayo Clinic’s oncologists, are open to – and receive – comments from readers.

And the Clinic does not only engage through its own platforms. Mayo Clinic’s Facebook page, with over 11,000 fans, is full of comments from, and dialogue with, facebook users.

Lee also told me about Mayo Clinic’s use of social media internally, where employees are engaged on how to apply the Clinic’s strategic themes to their role and work, and where

collaboration amongst the extensive team of specialists allows teams to be created around patient needs.

And if you wonder whether Mayo Clinic might just rest on its laurels for a moment, forget it. Lee told me of a current pilot aimed at improving the outcomes for patients from their first visit to a specialist. He said that physicians had found that they often spend a lot of time with patients on their first visit going over the same information. In the pilot, video content is used to provide information to dental patients before their first visit, so that more specialist care can be achieved on that first visit. This pilot is ongoing and Mayo Clinic will be assessing how this helps patient and provider satisfaction.

Lee’s advice for others setting out to engage more effectively using emerging channels is to develop a personal familiarity with social media before applying it in the workplace. He encourages taking the time to understand the ways of social media “so that you don’t end up with faux-pas that would be embarrassing to your organization and hinder adoption.”

Lee also points out the value of training your subject matter experts to engage effectively, and empowering them to do so. It is surely this combination of social media experience and expert subject knowledge that has made Mayo Clinic so successful at engaging patients in an educational, relevant way. And it is this approach that earns Mayo Clinic the well deserved Healthcare Engagement Strategy Award 2010 for Best Hospital or Clinic.

At the heart of the vision behind TuDiabetes is a simple goal: to provide a platform for people touched by diabetes to connect. The social network websites at www.tudiabetes.org and Spanish version at www.estudiabetes.org, run by The Diabetes Hands Foundation, do just that – with almost 20,000 members between them spanning the globe, they form a highly active community of people joined by a common medical condition.

In a recent conversation with Manny Hernandez, Founder of TuDiabetes, he told me why TuDiabetes is all about connecting people. A diabetes patient himself, his vision for the social network emerged after he personally experienced the value of being able to share experiences with others through a support group for an insulin pump he was using. He saw the benefit of being able to share experiences and learn from others, and was able to help others who had only just started using the pump he had been using for a year.

“We knew that it was valuable to connect with patients, and when you insert a social networking platform like Ning underneath that, you multiply the ability to make connections possible between patients, and eliminate the physical barriers“, says Hernandez, going on to explain how TuDiabetes makes it easier for people in rural areas or countries with access difficulties to reach out.

Hernandez explains that diabetes tends to be a ‘closet condition’ and people often find it difficult to be open about it. By making it easy for patients to connect with thousands of other people they can relate to easily, TuDiabetes has enabled patients to open up. Asked how he feels this compares with the experience

patients have when connecting with a healthcare professional, Hernandez says it’s complimentary:

“Communities like ours are not out there to substitute but rather to compliment the interactions with your medical team. No amount of patient advice can be a substitute for [the advice] you receive from your medical professionals. However, there can be a number of experiences by interacting with other patients that even the most committed medical team will not be able to offer.”

Hernandez explains that there have been many cases where members have learned new things about their condition through TuDiabetes, have gone on to read more, ask their doctor, and gain a better diagnosis,

improved treatment or ultimately better health. He talks about examples where patients have been misdiagnosed as having type 2 diabetes and discover through TuDiabetes that they may in fact have type 1 diabetes. This enables them to ask for specific tests from their doctor or to be referred to a specialist so that they can get the correct treatment.

This kind of real health outcome for patients is what we love about TuDiabetes. Hernandez says there are many examples of patients’ lives being improved through what they learned as part of the network:

“We have a lot of testimonials from people who describe specifically how they’ve been able to reduce their haemoglobin A1C number

Best Hospital or clinic

mayo clinicBest Patient community

tuDiabetes

from a higher place to a number in the 6’s or sometimes in the 5’s – that’s practically normal, non-diabetic A1C… by simply participating with others with diabetes who are doing things differently, then going back and discussing with their doctors and incorporating new things into their therapy.”

If you’re a patient with diabetes using the Internet, it’s highly likely you will at least stumble across the work of TuDiabetes somewhere online. That’s because the social network activity is not limited to TuDiabetes’ own website, but integrates with other social media platforms too. Whilst this affects membership of the central network, Hernandez says that interactions between people touched by diabetes on TuDiabetes’ other platforms such as Facebook or Twitter have also grown:

“Interactions between people that are seeking information or support – in this realm or with other kinds of conditions, chronic or not – is going to happen wherever it is most convenient for the person. And it may be as part of a comment in a video, or in a conversation between people in Twitter, or in a comment wall on a Facebook page. It’s important to acknowledge that, in order to not beat yourself over trying to drive traffic in a certain direction. We now see it in a more holistic way.”

This kind of integrated social media approach is evident in some of the most effective engagement activities TuDiabetes carried out in 2009. When members of the English and Spanish communities were invited to participate in a mass blood sugar testing event – testing their blood sugar and then sharing the result via Twitter, over 10% of members worldwide took part.

“It was a huge community moment because testing your blood sugar is a very personal moment, a very individual moment“, says Hernandez. “And it was interesting to see people’s reaction to the initiative. Diabetes removes control, and we saw lots of people share – the majority in the normal range, but some high values and some low values. And we saw people very respectfully saying, why do you think you might have that high value, or, go treat that low as soon as you can, and people sharing.”

On World Diabetes Day on 14th November, TuDiabetes ran ‘the Big Blue Test’ and invited several other diabetes communities to participate through their own members, on their own communities. People with diabetes were asked to test their blood sugar, then

exercise for 14 minutes, test again, and report on the experience. According to Hernandez, approximately 80% of the 2,000 people who participated reported a drop of around 20 points, just with 14 minutes of activity. He says that many people were shocked to discover that was possible: “It was a very powerful community moment, and a way to emphasise the value of exercise through the community.”

In the run up to World Diabetes Day, TuDiabetes ran the Making Sense of Diabetes program, which was sponsored by Boehringer Ingelheim.

Each week of October was dedicated to a different sense. Members were invited to submit a video of life with diabetes through that sense, with winners announced for each week. At the end of the process, in time for World Diabetes Day, a compilation video of winners was launched.

All these great community moments are the highlights of a lot of hard work that goes in to running TuDiabetes. I asked Manny Hernandez what advice he would give others looking to create a successful patient community online. His advice was highly practical:

• It’s critical to have at the helm of the community, running the community, people that are directly impacted by it. Because the kind of passion you have when you live with it on a daily basis goes a long way.

• It’s quite a bit of work, running a community. It’s not just about setting up a website and letting it run – you need to be on top of it. You need to nurture it, and make sure it stays on track.

• You need to define what ‘on track’ means for you. You need to define what the guiding principles are for your community (and they may be very different from one community to another). The first time that you need to take a hard decision, it helps if you have some clear rules that you are expecting people to follow.

• Have a clear vision of how you want the community to be. It is extremely gratifying when after a few years, you see that the community has continued to blossom and help others.

TuDiabetes, for your outstanding work achieving real outcomes for patients with diabetes and your constant innovation in social media, we award you Healthcare Engagement Strategy Award 2010 for Best Patient Community.

In contrast to many of the rich engagement strategies we’ve highlighted in the Healthcare Engagement Strategy Awards, computertan.com is a very simple, directly engaging campaign. The concept is straightforward: raise awareness of the dangers of skin cancer through overexposure to UV rays; reach those most at risk of UV overexposure by luring them to take a free trial of ‘a revolutionary new online tanning service’. Then instead, give them hard truths about skin cancer.

It’s all delivered in a highly creative, fun and engaging way. The website at computertan.com reassures visitors that this is a safe alternative to sunbeds, and offers the free trial. Shortly into the trial session, the screen changes to reveal the message “DON’T BE FOOLED. UV EXPOSURE CAN KILL”, followed by five gruesome images of skin cancer and a statement that five people per day die of skin cancer in the UK. Users of the website are then invited to send the spoof to their friends. Clearly, many people accepted the invitation – to date the site has been visited over 1.5 million times.

I asked Kathryn Clifford from Skcin, the charity behind the campaign to raise awareness of skin cancer, who the campaign aimed to engage. She explained why the channel and creative format was perfect for their target audience:

“[We were engaging] people who love to be tanned; in particular UV tanning, and in particular sunbed users, and those with little knowledge of the dangers of being overexposed to UV, and those who are prepared to go to any lengths to get a tan. You can get through to a lot of these people through blogs and websites because people are really heavily connected online

with this. The campaign was particularly aimed at a younger audience, and teenagers, who use and interact with the web. They seem to be less knowledgeable or concerned about cancer in general, and are really unaware of the dangers of UV tanning.”

Clifford says that the campaign’s extensive reach was helped by the way that traditional media responded to the campaign:

“The press absolutely loved it, jumped on it straight away. It went hand in hand. It was televised so much; it was in [UK newspaper] The Sun, with 8 million readership. In fact, because of that we’ve formed a fantastic relationship with The Sun now, who in their words are on a ‘crusade’ with Skcin to raise awareness of skin cancer. So that’s a direct result – without this campaign we would not have had that. Because of the spoof and the very nature of it, it really did get talked about and raised more awareness, which is still going on now.”

Media response extended well beyond the UK too. Clifford says that the worldwide nature of the Internet allowed the campaign

to reach a further 180 countries, and that there has been a “huge response” from traditional media in those countries too.

Key lessons learned by Skcin through the campaign were related to the success of their approach. Clifford feels that the creative ’spoof’ approach was what gained the huge reach, and says they were very lucky to have had creative agency McCann Erickson working with them, who came up with the spoof idea.

She also says that the Internet is a great way to achieve this kind of exposure. “The web is a great way of doing it. It’s far more cost-effective, and it’s quantifiable; you know how many people have got your message. And it’s the way to go when you’re trying to reach a younger audience.”

“Skcin was formed to significantly raise awareness, and that’s what this campaign did“, concludes Clifford. We agree. And for that, we award the Computer Tan Campaign, Healthcare Engagement Strategy Award 2010 for Best Health Issue Awareness Campaign.

Best Health Issue awareness campaign

Skcin’s computer tan campaign

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Best Integrated engagement Strategy

get real. get a Prescription

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One of the things we like about the ‘Get Real. Get a Prescription’ campaign is the way health stakeholders concerned about patient safety in the UK worked in partnership to educate consumers about the risk of buying medicines online through unregistered pharmacies.

The result of this collaboration between Pfizer, UK government regulator the MHRA, the Royal Pharmaceutical Society of Great Britain (RPSGB), and patient groups like HEART UK and the Patients’ Association, was a hard-hitting advertisement shown first in cinemas and then, after an initial analysis of effectiveness, on UK television.

The advertisement was backed by digital resources to intercept consumers’ response. Online, the campaign tackled the counterfeit websites head-on with a paid search campaign that intercepted searches for online pharmacies and directed Internet users to a website where they could find resources to help them buy medicines online safely.

In a year when pharmaceutical companies were treading very carefully when it came to digital advertising, we like the way Pfizer innovatively used paid search to achieve an important patient safety outcome in the UK.

I asked Andrew Widger, Associate Director, Communications UK/Europe at Pfizer, about the online component of the campaign. He told me why it was important:

“Working online itself was an important element, as evidence shows that a high proportion of

illicit medicine purchases are conducted via the web, and through the web site we were able to direct consumers in the way we set out to, explain more about the campaign, and employ a variety of strategies to try and intervene directly in that online illicit ‘patient journey’ and ultimately try and change behaviour.”

The UK-focused campaign has reached stakeholders across every aspect of healthcare, providing resources for patients and carers, healthcare professionals, and pharmacists, as well as integrating with resources from the MHRA and RPSGB. Widger says that campaign elements have also been adopted and distributed by NHS Trusts, regional Police Forces in the UK, and major pharmacy chains as well as independents.

The campaign has some great tangible outcomes, too. In the first three weeks of the campaign, 62%

of people polled on the campaign website said that the campaign had improved their understanding of the issues, and would change the way they buy medicines.

The campaign was supported by extensive offline advertising using TV, press, outdoor, and through a far-reaching media relations campaign. Meanwhile, online advertising included a partnership with The Sun, and search advertising designed to intercept patients looking for medicine online. Overall, Widger says the online activity has reached 8,796,858 unique users.

I asked Andrew Widger what lessons have been learned through the campaign. He said there are many learnings, including the way that the campaign was supported by Pfizer medical and legal colleagues, and partner regulatory organisations:

“It should be remembered that while this campaign seems simple – a ’shocking’ visual representation of the dangers, as a hook to encourage people to find out more – it is firmly rooted in evidence from a variety of sources, and validated by in-house medical colleagues, legal counsel, and partner regulatory organisations. This provided an important basis for the campaign to push boundaries, in terms of memorable creative and the use of new channels and techniques, while being assured that any criticism could be met with robust, evidence based justification.”

Widger also explained that the campaign had to embrace two-way engagement. “We learned that such a campaign could not simply be ‘one way’ – and factored in time and resource to respond to enquiries from the public, and other interested parties as the campaign kicked off. This in itself can often be seen as a challenge in the highly regulated pharmaceutical industry, but is an essential part of maintaining and validating our engagement strategy.”

The campaign’s integration with social media channels also required flexibility, as Widger explains:

“We learned a lot about how different tactics can be used, and which are more effective at delivering different messages and results; and that it is important to be flexible, and appreciate that the community may ‘run away’ with your campaign – such as through discussing it and sharing it through Twitter, copying and reposting the video to YouTube.”

Finally, Widger offers three pieces of advice that others can learn from Pfizer’s strategy:

1. “Be brave – if a message is worth delivering, it is worth investing in the time to be creative.

2. “Be prepared – if you want people to take notice, and discuss your campaign and its messages, you need to be prepared to let them do so, and you need to be ready to offer further guidance, or respond to enquiries, or offer support to people and groups who want to join in – for example, we didn’t expect a local police force to adopt our materials.

3. “Be future proof – develop resources that can grow, change, or be repurposed as your campaign gains momentum. For example, our web assets have all been designed for future growth; while the video advert has been created in such a way that it can quickly be translated and repurposed for other markets. Consequently assets from the Get Real campaign have reached audiences in the Netherlands and Israel to date, and plans exist for use in other countries.”

For its integration of multiple online and offline communications channels, an excellent partnership between a pharmaceutical company, regulators, and patient groups, and for the results of intelligently tackling an Internet-based patient safety issue online, ‘Get Real. Get a Prescription’ is awarded Healthcare Engagement Strategy Award 2010, Best Integrated Engagement Strategy.

Rob Halper, Director of Video Communication for Johnson & Johnson, knows just how important video is in engaging people about health.

“YouTube is the second largest search engine“, he says. And it’s true: YouTube has been the second largest search engine in the US – surpassed only by Google – for over a year now. So it’s no surprise that the Johnson & Johnson Health Channel has achieved almost 1.5 million video views since its launch in August 2008.

And it’s not simply the number of views that impressed us. The J&J Health Channel is used for proactive engagement – it follows others, and makes regular updates and comments. Now, it’s easy to use video for broadcasting messages – we see this all the time amongst healthcare and pharmaceutical organizations. But this channel is also open to comments, and some videos do have a lot of comments!

There are many in the world of healthcare who are still wary of engagement in the kind of open, two-way dialogue seen in the J&J Health Channel. And that’s understandable – the Channel includes some down-to-earth and blunt comments. Rob Halper says he reviews them all, and has had to remove some of the more offensive comments, but he says he does not necessarily delete comments that disagree with what the company is publishing:

“It’s an open forum, except for inappropriate or off-topic comments”, he says. “And what I’ve found is that the community

corrects itself. If somebody says, ‘bipolar doesn’t exist, you’re all crazy!’ then somebody will say ‘yes it does, and if you had a loved one in this situation then you would understand’”.

Rob says that an important aspect of the Channel’s healthcare engagement is its ability to help patients and their caregivers know they are not alone.

“Based on the comments, some people are in a situation let’s say where they are a caregiver for someone with Alzheimer’s… there’s an appreciation just to know that there’s other support out there, as people are looking for other patients or people who have shared their experience.”

I asked Rob what advice he would give others embarking on a YouTube Channel healthcare engagement strategy. His response was to share the most useful lessons he he’s learned from his experience so far:

1. Keep the content fresh

2. Monitor comments every day, on a regular basis

3. Be open and honest. If you make a mistake, or offend somebody, take responsibility for it.

4. Don’t try to sneak in a commercial message without being transparent about it.

5. Remember it’s a living organism – it’s not something that’s static. You have to get your hands dirty. And it’s fun!

Johnson & Johnson, we are delighted to award you Healthcare Engagement Strategy Award 2010 for Best Engagement Through Video.

Best engagement through Video

Johnson & Johnson Health channel on youtube

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People in Healthcare engagement

lee aase, manny Hernandez, marc monseau, andrew Widger

Lee Aase

Lee Aase’s down-to-earth attitude to social media has allowed him not only to lead the way with Mayo Clinic’s healthcare engagement in his role as Manager for Syndication and Social Media, but to inspire many others in his field to learn from him.

In his spare time, Lee runs Social Media University Global – a resource blog where he educates others by sharing knowledge about social media.

Manny Hernandez

Not only the visionary founder of TuDiabetes and the Diabetes Hands Foundation, Manny plays a hugely proactive role in engaging diabetes patients and members of the TuDiabetes and estudiabetes social networks. We consider him to be single-handedly the most influential and engaged patient advocate in this digitally-connected world.

Through his passion for social media and in particular the Ning social network tool, authoring Ning for Dummies, Manny has influenced many both inside and outside healthcare to create and grow social networks.

Marc Monseau

Marc has led much of Johnson & Johnson’s pioneering use of digital engagement in healthcare, and he always seems happy to share what he’s learned with others. Amongst his peers in healthcare, he is considered a leading light in the battle to move the industry forwards in the use of the Internet to engage people.

Andrew Widger

Nominated by a colleague “for embedding social media deep into the heart of comms strategies across the business”, Pfizer’s Andrew Widger is an advocate for the company’s increasing success with digital engagement, proactively encouraging the embedding of digital strategies into communications initiatives and inspiring his colleagues to do the same.

These were the most exciting people in healthcare engagement in 2009 – people who brought significant change to healthcare engagement.

We haven’t ranked these four winners – they’re here for different reasons but they’re all making a real difference and they’re already inspiring those around them. Watch these if you want to learn how to make a real difference!

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It’s not the fact that PatientsLikeMe has a community of 50,000 patients that wins it this Award. It’s not the incredible way it grew a community of almost 10,000 Fibromyalgia patients in 2009 – with over 850 more joining in just the first three weeks of 2010. It’s not even the fact that 10% of US patients diagnosed with MS, and 20% of ALS patients, join PatientsLikeMe.

PatientsLikeMe wins the Changing Healthcare Award for being the engagement strategy most likely to change healthcare. In fact, don’t take it from us. Ask one of the members who responded to a recent PatientsLikeMe user survey: 21% of them said they had changed their physician as a result of being on PatientsLikeMe.

“We’ve probably got more attention than we deserve, for where we’re at“, says Ben Heywood, PatientsLikeMe Co-Founder and President. It’s not the only time during my conversation with him that he plays down the scale of what PatientsLikeMe has achieved.

“We’ve only just barely scratched the surface of the journey“. These are the words of a man who has seen the immense possibilities that emerge when healthcare becomes truly patient-centered, but knows there’s still a huge task ahead.

“One of the things we are attempting to do is to put the patient back in the centre of healthcare“, says Heywood.

“The first thing that means is giving them the information that they need

– not the information that’s defined by the healthcare industry… but the information that the patient needs to answer their question: ‘Given my status, what’s the best outcome I can hope to achieve, and how do I get there?’. That defines what we do.”

PatientsLikeMe is a patient community like no other. In fact, it is a collection of patient communities. Heywood says that as PatientsLikeMe grew since its launch four years ago, he and his team learned that there was really not much in common between the information needs or measurement paradigms of patients with diseases as diverse as Parkinson’s, MS and depression.

“I think our platform is significantly better than it was when we started, but really we’ve just only started on that journey“, says Heywood, referring to the changes that had to be made to keep all patients at the centre.

Amongst the direct outcomes for PatientsLikeMe’s members are the effects of enabling patients to find others with similar conditions.

“For patients and caregivers, we are there every day, making a difference. I can see it every day – we have this stream internally of anecdotes of people talking about how it’s changed their lives“. In PatientsLikeMe’s recent member survey, 85% of respondents said that they felt better about themselves because of recognition from others that their condition is real.

And the potential long term outcomes for healthcare are incredible. Browsing any of PatientsLikeMe’s communities provides a glimpse of the

information that can be gained when thousands of patients share information about their experiences and treatments.

Heywood is cautiously optimistic about how this information might change healthcare in the long term.

“This isn’t a controlled clinical trial; this is an evolutionary platform that’s continuously trying to measure better and better, human health”, he says. He sees potential for the data to be used in the clinical research space, but says there are barriers to overcome. “We know there’s a hurdle as a healthcare professional, coming to… this information that’s collected through shared experiences. …We have a long way to go to achieve full acceptance of this data.”

Advice for others? Heywood has two key points:

1. Health data is individual, so doing something meaningful with it is a challenge. It’s not simply about adding IT to healthcare.

2. Start by aiming to solve an individual patient’s problem; then solving two patients’ problems; before solving the whole community’s problems. Otherwise, it becomes too big a challenge.

PatientsLikeMe, for taking the power of a patient network and using it to change healthcare for patients right now, we award you the Healthcare Engagement Strategy Award 2010, Changing Healthcare Award. And we know there’s more still to come!

changing Healthcare award

Patientslikeme

What will you do next?If you would like to improve your health outcomes through engagement, creation Healthcare can help. Our ‘Discovery’ approach enables you to develop an informed engagement strategy, envision colleagues, plan for outcomes and measure results aligned with business objectives.

It’s easy to get started. For a confidential discussion about how we could help you, call us on +44 (0)207 812 6474 and ask for Daniel ghinn.

Or find out more about what we’re doing in your part of the healthcare world, at www.creationhealthcare.com.

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Healthcare engagement in a digital world

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