Web 2.0 woven into health information's future

Stethoscope coming through a computer monitor As use of web 2.0 tools becomes all pervasive, how can health and social care services embrace the technological, sociological and cultural changes to form part of the future of healthcare information? Helen Wilcox reports on a BCS Thought Leadership Debate, which considered that question.

Social networking and other collaborative tools are bringing patients together to discuss their health and healthcare. It's a move towards citizen centred information, which is in line with the government's philosophy. Web 2.0 can help meet certain areas of the vision for the future of health information and open up new opportunities, but it brings challenges too.

This was the thrust of discussion at the Thought Leadership Debate on 20 January, held at the Royal Society of Medicine. Participants included professional bodies, academics, healthcare professionals, health informatics professionals and suppliers, representing the public and private sectors.

The event kicked off with two presentations after which delegates discussed the issues in smaller groups under the Chatham House Rule. Glyn Hayes, past chair of the BCS Health Informatics Forum, chaired the event.

Current uses of web 2.0 in health

From anti-smoking campaigns on YouTube through to support communities for Alzheimer sufferers, patients and volunteer groups are already harnessing the potential of web 2.0 tools.

The term web 2.0, coined in 2004 by O'Reilly, is about using the tools of the web to make the internet a more collaborative place. They include blogs, wikis, Wikipedia, podcasts, mash-ups, and social networking sites. Web 2.0 can put patients in control. It's about the individual and what you can do on the computer, and about virtual communities making use of the internet.

There are already numerous examples of web 2.0 tools being used in the health sphere. For example, HealthMap is a 'mash-up' where different authors and RSS feeds are combined with Google Earth, aggregating information to examine outbreaks of different conditions.

In social communities, such as Second Life, virtual patients can visit Health Info Island, where they can obtain real information from real medics on their condition. There's also a place called Health Library.

In fact, health features prominently in the various communities. On the social networking site, MySpace, for instance, a group relating to depression has one of the largest memberships.

Medical professionals are involved too, for example with the medical wiki, Ganfyd.org, which is a collaborative medical reference that can be read by all but only edited by medical professionals and invited non-medical experts.

What is the future of healthcare information?

The government's philosophy is to make information more patient centric. Users are increasingly helping shape health and social care services.

One suggestion of what they are likely to require is a health service which provides safe, effective, up-to-date, 21st century care, in a Martini way - to suit them anytime, any place, anywhere. Better still, patients would hope not be at risk of preventable harm. Plus, where possible, the health service will prevent them from getting ill in the first place.

To move forward on health information, first the privacy debate needs settling. Citizens must be able to trust the NHS to keep their data private and safe. The NHS must work out how to define and build sustainable trust, and who should control the flow and use of information. The NHS must provide the information that patients need and want.

There is sometimes a tension between servicing the wants of individuals and the needs of populations. Without trust, the use of informatics to improve health and healthcare will be limited; with trust, there comes responsibility to use information and information technology in line with the highest standards of information governance.

The consent approach to privacy may in fact be making life too complicated, in which case another solution would need to be found. In fact, the privacy debate may be overstated, given that many younger people appear to have a different attitude towards sharing personal information, happily posting large amounts of it on social networking sites.

On the other hand, emerging sciences such as genetics, genomics and bio-informatics bring with them new privacy challenges. For example, someone sharing information about their own inherited diseases and genome could cause privacy issues with their children and relatives who may not have consented to sharing and may be disadvantaged through their link to that relative. They could, for example, be refused loans, insurance and mortgages unless the financial industry shows an unexpected move away from simple actuarial tables.

The assimilation of these emerging sciences and associated technologies must be built on the same patient-centric foundations as the clinical and patient records. We must be sure that what is currently being built is able to service the needs of genetic and genomic information.

For privacy, and indeed all health information matters, there needs to be more effective two-way communication between the citizen and the health service. The health service and HI practitioners must communicate better what they are doing and why. HI practitioners need to inform the public and engage journalists, for example, on why infrastructure developments are taking so long. Success needs to promoted, as so often only failures attract the limelight.

Communication helps with the task of educating citizens. Good education and professionalism are also needed for clinicians and HI professionals to ensure an effective future for health information. Knowledge needs to be brought together with information and assimilated into behaviour.

Healthcare information has to have usable standards, and useful terminologies. There needs to be a way to stop the 'coding wars' that have plagued the last 25 years. There is a fundamental clinical and patient safety need for robust and transparent record-keeping standards.

Some data standards need to be patient or user driven. Health service safety is often compared with airlines - should passengers, for example, be involved in standards on seat size in aircraft? Standards are a necessary part of safety. What is the difference between user preferences and user-driven standards? 'User' is a tricky word to define.

Similar health information problems are being encountered all over the world. It makes sense to solve them once well, rather than different countries working on them independently, especially in an age of globalisation.

That said, although certain actions and collaborations make sense at a global or national level, others benefit from localisation. In England, for instance, the infrastructure for the National Programme for IT had to be run centrally, while localisation could help responsiveness. It would also support smaller suppliers, who have a history of developing the most innovative products.

Equally, the NHS has to be prepared to partner with commercial developments. It cannot afford to ignore services arising commercially - such as Google Health and Microsoft HealthVault - where citizens can create their own personal health record.
The challenge is to harness commercial contributions without compromise to clinical outcomes and patient confidentiality.

Working with suppliers and citizens, clinicians and health informatics professionals need to lead the marketplace for software, collaborating to make it work.

Having worked out where health information should be aiming for in the future, the outcomes must be defined and then reached via small steps. It should start with the patient and move forwards one step at a time.

Realism and pragmatism must rule. For example integrated care pathways should not be combined with the medical record until the necessary basic foundations are in place, such as standardising terminology, and getting professionals to define meanings.

How can web 2.0 technologies contribute?

What part can web 2.0 play in this future scenario? Firstly, web 2.0 has a clear role in empowering patients, who would be able to use these tools to access online services, information and communities at a time and place to suit them.

Patients can use the tools to create the social communities that they want, giving guidance and peer group support in their own language. On chronic illness, published research shows that there are benefits from social interaction, blogs, wikis and social spaces.

The internet enables people to come together. Most cases of ill health never hit the clinical record at all, but those affected can potentially find solutions and solace online.

Social networking communities offer patients the chance to express their feelings, which is considered an important part of the healing process. Men, who can be poorer at talking about health problems in person than women, are being found to be more open to going on social networking sites, and using them to communicate and get therapy.

Web 2.0 offers tools that could be used for direct communication between patients and the NHS. They can help disseminate knowledge and provide education for patients and healthcare professionals via peer and volunteer groups, and via the NHS if it embraces the tools. The pros and cons of the NHS being involved are discussed below.

The mindset of patients and clinicians needs to be changed so that they are encouraged to explore what they are not accessing. There is often a misconception that the use of the internet to find information is confined to the young, but pensioners are using the internet more to look up health information than the 18-24 year old group, according to an IBM study.

Even so, does online information reach those who need it the most? In Scotland, the NHS wants to target the socially disadvantaged who don’t have computer access, not the middle class which already goes online for information.

Social networking could potentially complicate privacy issues, as it involves individuals sharing data. On the other hand, it could help solve the privacy consent issue as the individual will control the information about themselves on social networking sites.

Web 2.0 is ideal for bringing together geographically dispersed communities, facilitating global collaboration. When developing standards, for example, folksonomies and social networking tools could be used to unite a community and design standards online.

Web 2.0 is also suited towards a step-by-step approach to reaching outcomes. For instance, in the past, by old-fashioned networking means, a support group connecting families with rare disorders gradually became a national organisation, which now supplies material to doctors' surgeries.

Challenges of web 2.0

There are various issues that need resolving around using web 2.0 tools. A fundamental question is whether the NHS should be involved at all? One advantage would be that the NHS could provide a trusted source of assured information, helping raise trust in web 2.0 offerings.

On the other hand, most people are generally good at sensing which sources on the internet are reliable. An un-moderated free for all could provide a counterpart to the professionalism that is also needed. Plus, there are so many good groups in the voluntary service, while it could be argued that the government and NHS are about control and metrics, which doesn’t improve health.

In considering whether to become involved with web 2.0 tools, the NHS needs to measure the value of, for instance, doctors spending time contributing to social networking groups.

Online social networking may be a relatively new phenomenon but support groups have existed in the past. So, is this really such a new problem anyway, or can the approach to non-web-based groups simply be extended?

There is also the question of whether consumers should be given all they want. Does healthcare sit alongside other consumer goods?

If the NHS does decide to embrace web 2.0, it would have to decide which part would run the services and pay clinicians to provide information online. NHS Choices is one possible vehicle.

Another issue to resolve is how to prepare clinicians for the new model. As patients communicate more, the colliding and different models held by patients and healthcare professionals will be exposed and exacerbated by new technologies. Patient-reported outcomes will become more important. There is a need to look at standards/accreditation of information presentation and so on.

In conclusion, web 2.0 appears to offer various benefits, but how the NHS and HI profession should be involved and use them is not so clear cut. Given the potential of these tools, however, it is worth considering how they could fit into the future of healthcare and of health information.

February 2009