The International Alliance of Patient Organizations (IAPO) released a “Policy Statement” last week to outline recommendations for information providers to meet consumer information needs. IAPO calls for greater patient involvement in policy development. IAPO explains the need for the statement:

“At present, the patients’ voice is not valued enough in policy-making and practice.  Patient involvement is often merely tokenism; its influence on policy-making can be restricted by practical and financial structures, differing knowledge bases, cultural barriers and personal attitudes.  Patient involvement should not be dependent on the good will of individuals but institutionalised in policy frameworks in order to become the rule, rather than the exception.”

IAPO’s policy statement includes four specific recommendations:

1. Stakeholders should extensively review existing healthcare mechanisms and structures for patient involvement, working with patients and patients’ representatives so that patient involvement is integrated into all decision-making processes, occurring from the start and on an ongoing basis.

2. Patient involvement initiatives should follow IAPO’s guidelines which incorporate the following:

* Robust and transparent mechanisms to ensure that patient views are acted upon, not just recorded
* Inclusion in initiation, design, implementation, communication and evaluation of initiatives
* Practical, psychological, financial and educational support for participants
* Varied methods to reach underrepresented groups and to gather a diversity of views

3. Patient involvement should occur whenever decisions are being discussed which will affect patients’ healthcare or lives including, but not restricted to, the following areas:

* Expert committees (e.g. ethics committees, reimbursement committees, governmental advisory committees, healthcare prioritisation and resource allocation committees)
* Regulatory processes
* Facilities design and development (e.g. hospital construction or refurbishment)
* Education and training programmes design (e.g. for health professionals)
* Research development (e.g. clinical trials design)
* Care and treatment guidelines design

4. All patients’ organizations should insist on involvement in all relevant health, economic, social and other policy-making where decisions will have an impact on patients’ lives.

My meeting experience using Cisco’s TelePresence technology brought new meaning to the phrase “just like being there.” I had a lively conversation with some of the UK’s leading information prescribing advocates this morning (or this afternoon if you were sitting on the other side of the table in England).

Two of the participants were from Cisco’s Internet Business Solutions unit — Kevin Dean from the UK side and Danny Sands (who also sits on the IxCenter Board of Directors) — normally in Boston but was down in DC today. Also on the other side of what truly felt like one oval table were John Cain from the UK Department of Health — who has headed up a lot of their patient empowerment work — and Mark Duman, President of the Patient Information Forum.

As I’ve described before, the UK government is way ahead of the US in this area, having already written into their National Health Service Constitution a guaranteed right to information in advance of any treatment. The UK government has taken a leadership role in advancing information prescribing throughout the country.

What I did learn more about today is that converting such good intentions into Ix that is embedded into standard care delivery is still a work in progress. The UK Department of Health currently funds the information prescribing activities, but the National Health Service (NHS) has not yet been able to embed Ix into the care delivery process of NHS providers. The result is that much of the Ix transpiring in the UK is actually from the UK government directly to the people. It’s more of the over-the-counter Ix model.

The UK Department of Health has several Ix initiatives in the works. They are developing tools to make information prescribing easier to use in normal practice settings. They are developing information standards and accreditation processes. They also figuring out how to embed patient experience into the design of Ix services. And, more regionally, other efforts are advancing Ix, such as Scotland’s national health information service that has citizen advice bureaus staffed by health navigators to guide consumers to needed, personalized information.

I shared with my friends across the pond some of the critical opportunities to advance information prescribing now in the US. The IxCenter continues to work closely with several agencies within the U.S. Department of Health & Human Services (HHS) on the development of an information prescribing objective for Healthy People 2020. In addition, legislation to require patient decision aids, a consumer view of “meaningful use” of HIT, more emphasis on consumer needs in the roll-out of comparative effectiveness research, and other legislation could go a long way toward embedding expectations of Ix into everyday care delivery. I also described the IxCenter’s work around advancing more robust models for evaluating the quality of health information.

Our small group had far more to discuss than time available. We’ve agreed to continue our cross-national conversations on information prescribing best practices and strategies for infrastructure development. Hopefully, we’ll continue to learn a lot from our international dialog and truly embed information prescribing into care delivery processes.

The British government’s National Health Service continues to advance the expectation of information prescriptions (Ix) as a normal part of health care delivery. In January 2009, the UK’s National Health Service (NHS), though legislation, created the NHS Constitution that establishes information prescriptions as a right.

Their Department of Health this week issued the following press release, which contains multiple references to “information prescriptions.”

“The Department of Health is introducing measures to enable patients, service users and their carers to have access to better quality, personalised and reliable information about their health and social care.

The measures are part of a drive to ensure people have access to quality information that will enable them to make informed choices about their overall care as prioritised in Lord Darzi’s High Quality Care for All and the NHS Constitution.

Access to tailored and personalised information will be delivered by two main initiatives - Information Prescriptions and an information accreditation scheme.  Information Prescriptions aim to improve access, whilst quality will be improved via an information accreditation scheme.

As well as being able to access this information at home, these initiatives are expected to be delivered through frontline health and social care professionals such as doctors, nurses, allied health professionals, social workers and other healthcare providers.

Mike Cheshire, Clinical Vice President at the Royal College of Physicians, said: “Patients need to be at the forefront of their care, where they can make the right decisions about their treatment based on reliable, up-to-date and easy to understand information. This is a wonderful initiative that provides a great start to enabling patients to make informed decisions about their healthcare.”

Patients and health and social care professionals will be able to access quality information through NHS Choices (www.nhschoices/informationprescriptions), which currently details 13 long-term conditions. A further five long-term conditions - schizophrenia, bipolar disorder, lung cancer, cervical cancer and epilepsy - will be added in early April 2009.

Parliamentary Under Secretary for Health Services at the Department of Health,Ann Keen MP, said:  “People have always been able to have information but both the quality and quantity can vary greatly. These measures are designed to ensure that people have consistent and reliable information that allows them to be in control of their care and manage their condition better.”

Information Prescriptions are free and contain information on the patient’s condition and treatment, while pointing people to additional services such as benefits and local support groups.  As well as being available nationally on NHS Choices, it is anticipated that Information Prescriptions will be available via a range of communication methods to suit the person, including collection, consultation, phone, electronically, video diaries and by post.

The information accreditation scheme will work with Information Prescriptions.  It will quality mark organisations providing information, assuring the quality of the information source. The scheme is currently being tested with 39 information producers across public, commercial and voluntary sectors and will be launched later this year.”

Hopefully, the work of Healthy People 2020 will help to do the same in the United States.

Bristish IxAction Alliance member, the Patient Information Forum (PiF), has just released a report, “Information: First Line Therapy?” (overview available here). Among PiF’s main conclusions:

1. Whenever possible, information should be the first therapy prescribed.
2. Information therapy (Ix) needs to be personalized and targeted to the “correct stage of the patient journey.”
3. Because of the vast information available and that the fact that much of it is “incorrect or misleading…there is a definite need for a more stringent monitoring system, condensing information and/or signposting information to direct professionals and patients to the most suitable resource.” They’re not sure how to operationalize this recommendation.

Based on these findings, PiF has identified a series of next steps — some of which are:

1. PiF wants to develop a bigger research base in three areas: a) “how information can be integrated into routine theerapuetic management;” b) “measure the impact of health information;” and c) assess the current state of “health information provision.”
2. PiF plans to become a more forceful public policy advocate in this arena in the UK.
3. PiF recognizes that it needs to “find ways to help the consumer health information workforce develop in their roles, increase their skills and share their knowledge and experiences more widely and effectively.”

The Center for Information Therapy (IxCenter) has answered some of the research questions in our white papers.

• “The Mysterious Maze of the World Wide Web: What Makes Internet Health Information High Quality?” evaluates the quality of diabetes content on the Web and — based on empirical research and scientifically validated tool development — provides a series of policy and operational recommendations for advancing more robust measurement of information quality.
• “The Ix Evidence Base: Using Information Therapy to Cross the Quality Chasm” synthesizes the empirical evidence in support of Ix interventions and organizes them around the Institute of Medicine’s 10 health care delivery redesign recommendations from its “Crossing the Quality Chasm” report.

The IxCenter also has conducted other relevant research to answer these questions that fall into two categories (both of which are accessible to IxAction Alliance members through our member portal):

1. Ongoing review of the peer-reviewed literature. Through our bimonthly IxResearch Briefings, we have added about 40 more studies to the original “Ix Evidence Base” white paper, each of which describes implications for implementation of initiatives focused on proactive and targeted delivery of information to consumers/patients.
2. We have also collected more than 40 IxInsights reports and associated archived webinars on a wide array of innovations or best practices in the field. Although many of these interventions were implemented without a prospective study design, they still offer critical learnings about the best Ix implementation strategies.

As I have alluded to before, Ix Pioneer Sponsor Group Health Cooperative has provided a seed grant to help us develop a database that rigorously and methodically integrates these two types of evidence. By doing so, we will be able to answer the questions posed by PiF (and others) more robustly.