ICT CIP Competitive and Innovation Programme s1

ICT CIP – Competitive and Innovation Programme

UNIversal solutions in TElemedicine Deployment for European HEALTH care (Grant Agreement No 325215)

Document D4.3 Annex 6 UPAB meeting Brussels, 5th November 2015 Version 1

United4Health User Policy Advisory Board meeting: “Reflecting on the emerging proposed policy messages”

Report from meeting Thursday, 5th November, 2015 Rue de Trèves 49-51, B-1040 Brussels, Belgium

This board meeting was hosted thanks the European Public Health Alliance in Brussels, Belgium.

Work Package: WP4 Version & Date: v1 / 5th November 2015 Distribution Status: Confidential Author: Diane Whitehouse, EHTEL Filename: 057c97eaf6f58cbac49068a091bd87c3.doc

The information in this document is provided as is and no guarantee or warranty is given that the information is fit for any particular purpose. The user thereof uses the information at its sole risk and liability. D4.3 Annex 6 UPAB meeting Brussels, 5th November 2015

Table of Contents

TABLE OF CONTENTS 2

1. OVERVIEW 3

2. DURING THE COURSE OF THE MEETING 4

3. OVERVIEW OF PREVIOUS COMMENTS IN FOUR MEETINGS AND EXTENT TO WHICH THEY ARE ALREADY (OR NOT) TAKEN UP IN THE POLICY MESSAGES 6

4. COMMENTS FROM U4H BOARD MEMBERS ON INVOLVING (OR NOT) THEIR MEMBERS IN ANY COMMENTARY ON THE POLICY MESSAGES 7

5. TASK FORCE MEETING FOLLOWED THE U4H UPAB MEETING 8

6. GENERAL TIMELINES FOR U4H POLICY TASK FORCE TO REPORT TO THE U4H MANAGEMENT TEAM 9

APPENDIX A: UNITED4HEALTH FINAL CONFERENCE ON 1ST/2ND DECEMBER 2015 10

APPENDIX B: AGENDA 11

APPENDIX C: ATTENDEES AND APOLOGIES 13

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1. Overview

The meeting emphasised the notion of deploying telehealth in real life in routine care for patients. The United4Health project provides strong messages in terms of providing observations on the “how” side of deployment.

The board members were asked to advise the project (including the management team) on what should be the most important and pressing policy messages. It was emphasised that it is the task of the United4Health management team to formulate the resulting policy messages (i.e., the team will select which UPAB messages it wants to absorb or not). Further interpretation of the policy messages is likely to occur in the future after the project ends: these will form a kind of “spin-off”. It is possible that EHTEL will take care of this activity.

The meeting was held in four parts during which presentations were made on:  Background to United4Health project (Session 1).1  Proposed policy messages (Session 2).  Round table: general and specific feedback (Sessions 3 and 4).  Previous policy messages from U4H UPAB (Session 5).  Final steps of the board until the project ends (Session 6).

The board members were generally supportive of the proposed policy messages.

This board meeting benefitted from the number and diversity of association attendees. The AER sent a number of observations on the policy messages c/o Diane Whitehouse, who had attended its end-of-year meeting in Winchester England on 2nd/3rd November 2015 where the United4Health project was discussed in some detail.

See Appendix B of these meeting minutes for the 5th November 2015 meeting agenda and Appendix C for the list of attendees.

1 The day’s agenda was modified slightly, so as to capture the dynamism of the input.

2. During the course of the meeting

The general messages received from the associations present were (associations listed alphabetically):  (AIEP) Make it clear to audiences/readerships how the project will handle findings that emerge until 31st December 2015 (and beyond). Ensure that it is clear that the policy messages represent just the findings found until 5th November 2015.  (ECC) (1) Note the diversity that exists among the various chronic conditions. There may be less evidence available about the benefits of telehealth in terms of some conditions, e.g., COPD. (2) Be aware of the risks when equipment and personal data is handled by third parties, and also situations when equipment fails or breaks down or needs replacing.  (EFANet) Guarantee patient safety, security and privacy.  (EPHA) Provide some examples of how patients “felt better”.  (UEMS) (1) Pay attention to the possible dangers that can arise. (2) Distinguish between mHealth applications and applications provided by public sector health/care authorities.

The background to the proposed policy messages was generally accepted. Several small changes were captured during the course of the meeting principally to PowerPoints 7, 8 and 11 (i.e., the draft policy messages themselves). The comments related in the main to:  The need for an introductory “policy background” to the proposed messages, e.g., including the Digital Agenda for Europe; the European Innovation Partnership on Active and Healthy Ageing.  The need for a specific definition of “telehealth” (to be drawn from the most recent United4Health brochure).  The possibility of using alternative terminology e.g., technology- enabled care or the “digitalisation” of healthcare.  Terminology with regard to, telehealth not “fully” replacing face-to-face usual care yet being considered as “equivalent” or “equally important” to usual healthcare services.  Reinforcement of messages relating to “trust”.  Concerns related to issues of legality, liability, and regulation.  A focus on care pathways ensures that there is continuity of care.  Motivations and incentives (encouraging people to use telehealth rather than forcing them to use it).  The cost-effectiveness of telehealth.  Integration of healthcare with other systems involved in service provision.  Healthcare professionals, including clinicians, as key movers. Clinical engagement (and scepticism about technology on the part of clinicians in some areas/fields) continues to be a matter of concern.

 A focus on “individuals” rather than citizens (there was some concern that, as a result of the usage of the word “citizens”, some countries may not permit others i.e., residents or migrants in Europe to benefit from telehealth).  Measurement of social impact e.g., reduction in non-attendance at work on the part of carers (i.e., health technology assessment).  Accuracy of means to record the channels used in the interactions between patients and professionals (i.e., face-to-face, telephone, email, SMSs, physical correspondence).

Questions posed by the attendees related to the following topics. The participants appeared to be satisfied by the responses they received on the:  Available evidence for patients “feeling healthier”.  Extent to which there was self-selection among the patients involved in the pilots.  Extent to which a specific pilot site was able to “hand-pick” (or not) the clinicians involved.  Extent to which the technologies were difficult to use (or not).  Extent to which the care involved was routine, paid, or informal.  Reinforcement of the need for investment in telehealth.  Relative strength of the message(s) with regard to “telehealth is happening anyway” (or even “there is no alternative” [to telehealth]), “there is a shift towards a situation in which people cannot live without this health-related support”, “avoid creating divides (be aware that some people will always find using the technologies/equipment or being health literate challenging”, and “protect people from any dangers inherent in the technology use”.

U4H user policy advisory board members were encouraged to signal the three major bullets they find to be the most important for their association/members.

3. Overview of previous comments in four meetings and extent to which they are already (or not) taken up in the policy messages

The notes from previous meetings had been captured systematically, and were commented on in the format of a set of PowerPoints.

It was noted that the U4H policy taskforce had very much used the notes from previous U4H user policy advisory board meetings to assist in the formulation of (a) the project policy messages, and (b) the lessons learned captured by the project evaluation team.

4. Comments from U4H board members on involving (or not) their members in any commentary on the policy messages

Reactions are listed in alphabetic order of the associations present.  (AGE Europe) The association does not see it as realistic to approach its members with only a three-week timeline. The association already has a good basis for the position it will take on eHealth. Hence, its commentary is likely to come direct from the association’s secretariat.  (AIEP) The association will do its best to send feedback by 1st/2nd December 2015 (because its new eHealth representative only starts to work with the association on Monday 9 November 2015). It is willing to work further on the policy messages in 2016.  (AIM) The association will send the materials to the association's general secretary and secretariat for feedback. It is likely to encourage messages on telehealth as part of routine care, and the need for appropriate reimbursement for telehealth.  (CPME) The association will request commentary from its eHealth working group via email: it notes that it already has a 2013 public statement on eHealth. It welcomes the possibility of working further on the policy messages in 2016.  (EFANet) The association has a committee on patient education, and the materials will be handed to the person in charge of this committee.  (UEMS) The association will get feedback from its members by 1st/2nd December 2015. It is happy to work further on the policy messages in 2016.

Diane Whitehouse was encouraged to follow up with the associations that had been unable to attend, and or who had left the meeting earlier.

5. Task force meeting followed the U4H UPAB meeting

A taskforce meeting took place immediately following the U4H UPAB meeting, and captured observations from the meeting that were to be transferred to the U4H management team. They relate to:  The messages to be added about the policy background of the project, the description of the project, and a suitable definition of telehealth.  Topics to be included in the policy messages, such as: trust, particularly in terms of telehealth’s potential for strengthening clinical and patient engagement; issues related to safety and privacy; reimbursement of telehealth; and consideration of telehealth as the “equivalent” of usual care; legality/regulation.

The four main action points arising from the meeting were that all board members should:  Comment on the PowerPoints by Tuesday 1st December 2015 at the latest.  Validate other policy messages documentation, including this meeting report. These findings will be incorporated/consolidated into deliverable D4.3 of the project.  Continue to register for the United4Health final conference, to be held on the revised date of Tuesday/Wednesday 19th/20th January 2016: https://www.ehtel.eu/activities/ehtel-symposium/joint-digital-healthcare-events- 2015-7th-ehtel-symposium, in particular the parliamentary session (to be held on 1st December 2015).

6. General timelines for U4H policy task force to report to the U4H management team

 Monday 9th November 2015: U4H Management team to discuss policy messages document in its regular conference call; Leo Lewis is willing to talk the management team through the document.  Wednesday 11th November 2015 End of business: Management team, and task force, to send comments to Diane Whitehouse (with the possibility of a round of discussions with e.g., the policy task force members on Wednesday afternoon).  Thursday and Friday 12th and 13th November 2015: Diane Whitehouse to re-work document (with the possibility of a round of discussions with e.g., task force members to be held on Friday morning).  Monday 16th November 2015: Opportunities for any last small changes to the policy briefing document; submission to Marc Lange (for delivery to STOA/Parliamentary Session).

Appendix A: United4Health final conference on 1st/2nd December 2015

Register Now for 1st-2nd December 2015 in Brussels, Belgium

We invite you to join European, National and Regional policy makers to debate what it really means to use eHealth and mHealth at scale to transform healthcare delivery.

Why to attend?  European Healthcare systems are at a crossroads. Balancing cost, accessibility and quality of healthcare seems to be an impossible equation.  Join MEP Eva Kaili and participate in the Joint Digital Healthcare Event at the European Parliament in Brussels. Doers from the field will confront policy makers of what it really means to use eHealth and mHealth at scale to transform healthcare delivery.  Learn about the headline lessons learned and outcomes from the evaluation of the large scale European telehealth deployment project United4Health.  As the pace of technology innovation is ever increasing, you will be invited to look forward into the future of healthcare transformation.

Appendix B: Agenda

United4Health user policy advisory board “Reflecting on the emerging Proposed Policy Messages.” ARRIVALS: 9:30 - 9:45 CET AGENDA: 10:00 CET - 15:00 CET Hosted thanks to EPHA EHTEL (European Health Telematics Association) Rue de Trèves 49-51, B-1040 Brussels, Belgium, To arrive: Elevator A, 2nd floor, Metro station: Maelbeck. In case of difficulties: Diane WHITEHOUSE (Mob: 00 32 496 29 59 32) Chair: Marc Lange (EHTEL, Belgium) Rapporteur: Diane Whitehouse (EHTEL, Belgium)

PURPOSE OF THE MEETING This is the last meeting of the United4Health large-scale pilot's User Policy Advisory Board. It occurs prior to the project’s final conference on Tuesday/Wednesday 1st/2nd December 2015. The task of the meeting is to take a look at the provisional policy messages, emerging from the project, that have been drafted by the United4Health management team assisted by a task force.

It provides a means for the board members to: • Get the message that telehealth is really happening now • Get involved in discussions on what the policy level should concretely do to take care of the needs of people in Europe in terms of telehealth.

9 45 - 9 50 Welcome - Marc LANGE (EHTEL, Belgium).

FIRST SESSION: BACKGROUND AND OVERVIEW

9 50 - 10 10 United4Health: the project Diane WHITEHOUSE (EHTEL, Belgium) A brief introduction to this large-scale project, including its general background and the role of the user advisory policy board (UPAB) Purpose: To get all the attendees on the same page as far as the project background is concerned. Q+A (5 mins)

10 15 - 10 40 United4Health proposed policy messages Marc LANGE (EHTEL, Belgium) A rapid introduction/run-through to the proposed policy messages formulated by the project management team with support by a taskforce

Purpose: To run through the policy messages so as to introduce their orientations. Clarifications (10 mins)

10 50 - 11 15 Comparing the proposed policy messages with previous observations made by UPAB members Diane WHITEHOUSE (EHTEL, Belgium) A tabular presentation of how the proposed project policy messages compare and contrast to observations that the UPAB has made over its previous four meetings Purpose: To see briefly whether anything is repeated or missing. Comments (10 mins)

SECOND SESSION: GENERAL FEEDBACK

11 25 - 12 30 Round Table I of general feedback Led by Marc LANGE (EHTEL, Belgium) Capturing all UPAB members' opinions on the general orientation and directions of the policy messages.

SANDWICH LUNCH: 12 30 - 13 15

13 15 - 14 15 Round Table II of more specific feedback Led by Marc LANGE (EHTEL, Belgium) First, capturing all board members’ advice to the U4H management team, i.e., What messages should be the most important for the management team? What improvements can the board suggest? Where are there problems? Where is there something missing? Second, capturing views on how the associations represented could get more involved in passing the policy messages. How could these actions be taken forward in the longer-term future? What about a possible call of interest?

THIRD SESSION: TOWARDS A WRAP-UP

14 15 - 14 45 Final steps of the board until the project ends Led by Marc LANGE (EHTEL, Belgium)  Plans for feedback from your associations’ members.  Plans for the United4Health final conference, and involvement of the board.  Plans for promoting and disseminating the UnitedHealth findings.

14 45 - 15 00 Wrap-up and conclusions Marc LANGE/Diane WHITEHOUSE (EHTEL, Belgium).

Appendix C: Attendees and apologies

C.1 Attendees (10)  AGE Europe Borja ARRUE [email protected];  AIEP Simone MIOTTO [email protected];  AIM Rachelle Kaye [email protected];  European COPD Alliance (ECC) Catherine Hartmann [email protected];  CPME Bernard Maillet [email protected];  EFA-Net Roberta Savli [email protected];  EHTEL Stephan Schug [email protected];  EPHA Sascha Marschang [email protected];  UEMS Bertrand Laval [email protected];  UEMS Lise Carratala [email protected].

C.2 Observer (1)  Insurance Europe Lamprini Gyftokosta [email protected].

C.3 Task force (4)  EHTEL Marc Lange [email protected];  Continua Michael Struebin [email protected];  HIM SA Leo Lewis [email protected];  EHTEL Diane Whitehouse [email protected].

C.4 Apologies (14)  AIEP Francesco Briganti [email protected];  AIEP Brigitte Frere [email protected];  AER Johanna Pacevius [email protected];  CPME Constance Colin [email protected];  EBC Monika Kalkuseva [email protected];  EBC Fred Destrebecq ceo@ braincouncil.eu;  EFA-Net Giuseppe De Carlo [email protected];  EHN Laurent Louette [email protected];  EPF Walter Atziori [email protected];  ERS Brian Ward [email protected];  ESIP Marina Schmidt [email protected];  ESIP Christine Dawson [email protected];  EWMA Julie Bjerregaerd [email protected];  HOPE Silvia Bottaro [email protected].

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